As you've watched your parents get older, perhaps you have struggled with situations such as these:
- You've travelled to visit your mother for the holidays, and found her refrigerator nearly empty, her bills unpaid and her house in disarray.
- A neighbor has called you to report that your father was wandering in the street, unable to find the home he's lived in for 30 years.
- Your mother has neglected to take her diabetes medications, severely compromising her health.
- Your very independent father fell and broke his hip, making it impossible to navigate the stairs in his home.
If there is a decline in cognitive abilities as a result of Alzheimer's disease or a related dementia, or a shift in a medical condition that requires increased care, there is clear cause to be concerned about your parent's welfare. It may be time to consider a move to a safer environment.
But where should he or she live? Often your first inclination is to move Mom or Dad into your home—but this major life change deserves thoughtful examination, and there are many alternatives to explore. This Fact Sheet offers advice and summarizes the issues to consider before making the important and challenging decisions regarding relocating your parent.
First Step: Open Discussions
Open and honest discussion with your parent and other family members becomes an essential first step when you are trying to decide if moving your parent to a new living situation is the right thing to do. Family meetings with your parent, spouse, children, siblings and other key people will help everyone share their views and will help you decide how best to proceed. Active communication among all family members is the building block to a strong support system for an older parent and all family members involved.
Although some of these discussions may be very difficult and emotional, several topics require attention. Together, the family—including your parent—will need to talk about:
- all possible residential options
- the type of care needed
- each person's role in the transition
- changes in lifestyle
- the location of the new home
Expectations must be defined and clear to everyone involved. The following can help guide your discussions.
The Level of Care Needed
As your parent gets older, his/her care needs will change, and in most cases become more challenging. It's essential to develop a strategy for providing care, and this requires both practicality and planning. Consulting with a Geriatric Care Manager or social worker may be beneficial as you consider your options and what you will and will not be able to do for your parent.
- Evaluate whether your parent needs constant supervision or assistance throughout the day and how this might be provided.
- Determine which activities of daily living (such as eating, bathing, toileting) your parent can do independently.
- Determine your comfort level for providing personal care such as bathing or changing an adult incontinence pad.
- Evaluate your own health and physical abilities to help decide if you are able to provide care for your parent.
- Explore the availability of services such as in-home care, adult day services, meal delivery, a friendly visitor program,
- Investigate long-term arrangements and options if living with your parent will not work or is not your choice.
- Determine the type of medical care that will be needed by your parent, and whether appropriate physicians and services—including transportation services—are available in your community.
- As time goes by, expect changes in your parent's medical or cognitive condition.
Families are rich in historical experiences, and many of your positive and negative feelings about your parents and other family members will play a role in your decision to relocate or live with a parent. Be honest with yourself and do not allow unresolved conflicts or feelings of guilt or obligation pressure you into taking on more than you can manage.
- Be realistic about the significant life changes that relocating your parent will mean for you, your parent, your siblings, your spouse and children.
- Try to come to terms with past disagreements between you and your parent.
- When deciding whether to relocate or move your parent into your home, consider the opinions of your spouse, children, siblings and other family members.
- Come to an agreement with your siblings regarding how much and what kind of help you can expect to receive from them.
- Recognize that, despite possible cognitive or physical limitations, that your parent is an adult, is entitled to maintain as much autonomy and dignity as possible, and should be at the center of any decision-making.
Family Caregiver Alliance offers helpful Fact Sheets, Holding a Family Meeting and Caregiving with Your Siblings, providing more in-depth information (see the Resources section at the end of this Fact Sheet).
Living Arrangements and Housing Options
Moving your parent into your home is certainly one option, but you and your family should take some time to consider other living arrangements as well. The type of housing you choose will largely depend on three important factors: your parent's care needs, finances, and the service and supportive options available in your parent's or your community.
When deciding where a parent should live, family members need to discuss, understand and accept the benefits and drawbacks of living close to one relative versus another. Often, the choice of location can cause conflict between family members because those living near the parent often bear most of the responsibility for the parent's care, and may feel that those living further away do not help enough. On the other hand, family members who live far away can feel frustrated that they do not have the opportunity to participate more in providing care. An open dialogue and an agreement on how to share local and long-distance caregiving are essential.
Many residential communities for seniors are owned and operated by faith-based or other organizations with which your parent may feel an affiliation or interest. Ask your parent if they know of any friends who have moved to these new communities, and find out if your parent would be interested in being in the same community. Before any decision is made, visit more than one community with your parent, ask to join the community for lunch and get a facility tour, view the activities schedule and menu, and take particular note of how the staff interacts with the residents. Ask the community employees how they might accommodate your parent's interests, hobbies and transportation needs. If the community under consideration is a category of licensed facility, ask to view the facility's compliance history with minimum standards, and the number and types of complaints that may have been filed against the facility.
The following list outlines different types of living arrangements that may be appropriate for your parent. Each community offers different choices. Remember, Medicare does not usually cover these expenses.
Other options . . .
- Living Independently: Most people prefer to remain in their own homes if possible. Sometimes resources in the community such as meal delivery service, "friendly visitors," housekeeping, transportation or other in-home assistance provide enough support so your parent can remain at home, in familiar surroundings. Keep in mind, though, that it can be a hard sell for your parent to accept this kind of help if he or she feels you are meddling and the assistance is unneeded. These issues must be addressed in a family meeting. A small apartment, condominium or one-story house in their community or close to you 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. There are agencies in some cities that help arrange shared living situations. A newer option, called Naturally Occurring Retirement Communities (NORCs) or Villages, offers members—generally a group of older people whose homes are in close proximity—vetted services such as home repair, transportation and social/educational activities. There is a fee to join and the organization is directed by volunteers and/or paid staff. This is a growing movement across the country, and for some people, this is 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 services and numerous organized social and enrichment activities. Residents are free to come and go as they please and still retain their privacy, 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 dressing) often can be added for a fee. Some communities require that new residents be ambulatory (not in a wheelchair) at admission. Some places offer subsidized housing for low-income individuals, with stringent limitations.
- Residential Care Facility (RCF): These facilities are small group homes (sometimes called board and care homes or adult foster home) that provide supervision, meals and care for people who cannot be left alone but do not require skilled nursing care. Residential care facilities provide assistance with bathing, grooming, eating, using the toilet, and walking, and they also provide socialization and recreational activities. Rooms may be private or shared.
- Assisted Living Facility (ALF): Individuals who are somewhat independent but require daily oversight and assistance with housekeeping, medication management and personal care will want to consider an assisted living facility. Assisted living facilities offer rooms or apartment-style accommodations and, often, social activities. Meals are provided in a shared dining room. Staff is available to assist with care needs such as bathing, grooming, eating or using the toilet, and care is arranged as needed by the individual. Medical staff may be on-site or on call. The monthly charge for assisted living is determined by how much care a person requires and varies widely throughout the US. Some assisted living facilities are dedicated to—or include a separate wing for—those with Alzheimer's disease or other memory impairments. These "dementia care" or "memory care" units offer a special security-protected environment, and social and other activities designed for the abilities of the residents.
- Intermediate Care Facility (ICF): This type of facility provides 'round-the-clock care for those who require help with bathing, grooming, going to the toilet and walking. Individuals in these facilities cannot live independently and require nursing care, although the nursing care is not offered 24 hours a day. Residents generally require a lower level of care than is offered in skilled nursing facilities.
- Skilled Nursing Facility (SNF): Commonly called nursing homes, these facilities provide nursing services 24 hours a day and are designed to provide high levels of personal and medical care, such as administration of injections, monitoring of blood pressure, managing ventilators and intravenous feedings to individuals who cannot function independently. People living in skilled nursing facilities usually require help with the majority of their self-care needs; it would be very difficult to provide this level of care in a home environment. Medicaid (Medi-Cal in California) may help cover the costs if residents meet specific financial and medical requirements. Medicare may pay for a time-limited stay after hospital discharge, on a doctor's orders.
- The Eden (or Greenhouse) Alternative is a program in certain nursing facilities around the country to make the environment more elder-centered and less institutional. These are set up to encourage as much independence and interaction as possible for the residents, and to be more home-like. Contact with plants, animals and children is encouraged.
- The Program for All Inclusive Care (PACE) is designed for people 55 years or older certified by the state where they reside to be nursing-home-eligible, but who can remain at home with a complement of health and supportive services. Sometimes referred to as a "nursing home without walls" this growing care option is available in many, but not all, parts of the country. Most participants are Medicaid-eligible.
- 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 is not necessary. These communities often can be quite large and generally require a substantial entrance fee.
- Veteran's Communities may be available in your state, and offer multiple levels of care. From independent living with supportive health and social services, to skilled nursing facilities, these communities permit a veteran (or their spouse) to live in the same community.
Regardless of the type of facility you choose, be sure to visit each one. Don't be shy about asking a lot of questions. A preliminary visit should reveal a facility that is clean, smells pleasant, has staff actively but gently interacting with residents, and in which the residents are satisfied with their "home."
When Your Parent Moves in with You
Change of Family Roles. If you and your parent decide the best place for your parent is in your home, understand that living with a parent most likely will lead to a shift in family roles. A once-authoritative parent may become more dependent—you may become the guardian who gives direction and controls many aspects of your parent's life, while trying to preserve as much autonomy as possible for your parent. You may have less time for your spouse and for yourself. You may need your children to help with more household responsibilities including care of their grandparent. These role changes can be hard adjustments for everyone.
- Determine your ease with becoming the decision-maker and the person with authority.
- Be prepared for resistance from your parent if they feel that they can no longer set the rules, control their situation or fear losing independence, but make sure your parent is involved in the decision-making process and that their perspectives and preferences are heard.
- When possible, allow for negotiation in decision-making activities offering a greater chance for a win-win situation.
- Consider how your parent can contribute to the household, such as babysitting, doing light chores or making financial contributions.
- Think about your spouse's and children's readiness to help with caregiving, and their comfort level with having a grandparent in the home—particularly if he or she suffers from dementia.
- Think about ways in which your parent's traditional interests, routines and food preferences can be accommodated, without unnecessarily disrupting your own lives.
- Agree upon financial arrangements up front. Given available resources, will your parent be able to contribute towards food and utilities?
- If you have siblings or other family members with whom your parent is comfortable, can you agree in advance that they can stay with your parent, or accommodate your parent temporarily in their home so you are able to get a break from caregiving or take a vacation?
Lifestyle Changes. You and your parent probably have very different lifestyles. Sleeping cycles, eating patterns and preferences, social calendars, interests, and daily activities may need adjustments in order to guarantee a smooth transition.
- Talk about and plan how to accommodate bedtimes, nap schedules and sleeping habits of all family members in the house.
- Discuss what types of food you eat, when meals are prepared, and if special diets are required and how they will be accommodated.
- Assess whether smoking/nonsmoking or drinking/nondrinking practices are compatible.
- Consider how you can support your parent's continued participation in social networks such as visiting friends and attending a place of worship and how transportation to these and other activities will be managed.
- Encourage your parent to keep enjoyable and safe hobbies.
- Consider whether your parent will be fully integrated into your family's activities or whether he/she will maintain an independent social life.
- Consider how the household noise level and general activity pattern will affect your parent.
The Loss of Your Time. Caregiving requires a significant amount of time and is very likely to impact your work, family time, personal time and sleep.
- Determine the amount of time you can devote to your parent's care needs. When will you make phone calls for appointments or to set up needed services? When will you be able to take your parent to medical appointments?
- Evaluate whether you will need to make adjustments to your current work schedule and if your employer is willing to accommodate those adjustments.
- If you will reduce your work hours, determine the implications for your financial picture, career advancement, health insurance and Social Security and retirement benefits.
- Consider whether you will have time for your spouse, children and friends.
- If your parent requires full-time supervision, who will provide it while you are at work or attending your children's activities?
- Consider the reduced private time you will have to pursue your own friendships, hobbies or exercise, and your need for some time alone on a daily basis.
- Expect that you will, at times, feel your energy is spent and will need to find a way to rest.
- Investigate how to arrange for some time off from caregiving duties ("respite") and enlist the help of your family members, friends, a paid aide or a home care agency.
Your Home. Physical living arrangements must be adequate if your parent is to move in. There must be enough room and a layout that is adaptable to an older adult who may have mobility or vision problems. A home may require special adaptations to make it safe. Many of these changes are inexpensive but need time and planning to implement. Some families consider an addition to their home or the use of an "accessory apartment" (or "accessory dwelling unit")—a fully equipped modular unit that may be temporarily or permanently set up in the yard or elsewhere on a lot. Home health agencies and/or area agencies on aging may have the resources to do a home assessment in terms of home modifications, and safe lift/transfer techniques that are recommended to better assist your parent.
- Evaluate the amount of available space and whether there is enough privacy.
- Think about where your parent will sleep. How will a child feel if he or she has to give up a room for a grandparent?
- If possible, locate your parent on the first floor in order to avoid stairs.
- Consider major changes that may be needed in order to accommodate any disabilities or mobility problems, for example wheelchair-accessible bathroom and shower, different door handles, lower light switches.
- Determine what assistive devices may be needed such as grab bars in the bathroom, raised toilet seats, handrails and a ramp.
- If your parent wanders and is at risk for becoming lost, consider special locks, door chimes and other devices that will help keep doors and windows safely secured.
- Look through your home for hazards such as dangling cords, toxins, slippery surfaces, unsteady chairs, throw rugs. Consider installing a stove-top shut-off device.
- Install bright non-glare lights above all walkways, and low-cost adhesive strips on steps and other potentially slippery areas such as bathrooms and showers.
- Adjust temperature controls so that the house is not too hot or too cold. Be aware that older people often like their environment warmer and this may affect both your comfort and your utility bills.
- Discuss how you might incorporate your parent's furniture into your home.
- Review how existing or new pets will be integrated into the new home situation.
- Think about having a system or alarm set up so you can be alerted when your parent needs help.
Individual financial information may not typically be shared among your family members. However, if you are caring for a parent it may become necessary for you to become more involved in his/her personal finances, including paying bills, monitoring accounts and managing retirement accounts or investments. This can create problems with your parent or siblings who may question your access to and how you are handling your parent's money.
- Agree upon how much, if any, financial payment your parent will provide towards their living expenses. Will they pay for rent, food and other costs?
- Your siblings may be resentful of any money you might receive. Openly discuss financial arrangements with siblings to keep them updated on new expenditures and apprised of accounts.
- Come to an agreement between your parent and siblings regarding out-of-pocket expenses.
- Consider a preparing a formal legal document called a Personal Care Agreement describing any payment to you from your parent for accommodations or your caregiving services.
- To save time, investigate the option of automatic payment of recurring bills.
- Look into free or low-cost services that assist with Medicare paperwork for older adults.
- Be sure such legal documents are in place such as Durable Power of Attorney, Representative Payee, Advanced Directives, (See Resources section for the Fact Sheet Legal Planning for Incapacity.
Managing the Move
It is likely that your parent has lived in his or her current home for many years and has developed strong ties to community, family, friends, healthcare providers, social life and daily routine. 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 represent a tremendous emotional challenge. Moving away from this familiar and comfortable setting is difficult and can cause great sadness. Furthermore, leaving one's own house represents a decrease in independence and signals a new life stage. Often the thought of packing and sorting decades of history, memories and possessions is daunting enough to delay even considering the difficult decision to relocate. But there are some resources to help.
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. Regardless of services used, in most families the adult children still play key roles in this task. Open communication will help ease the way through these challenges.
While you help your parent pack, talk through the difficult feelings, acknowledge the loss that your parent is experiencing and reassure him/her that you are all making the best decision possible. Allow time and opportunity to reminisce. Reassure your parent that you will still be involved in their life regardless of their living arrangements—even in a new community you will want to ensure that the quality of care are services meet your parent's needs.
If your parent owns the home, consider renting it to tenants. The rental income can help defray extra costs that the family may incur, or help pay for the care provided in other community settings, and offer certain tax benefits. In addition, renting the home, rather than selling, can also give your parent a longer transitional period to adjust to new living arrangements. Selling a long-time residence can seem very final, and can add an extra dimension of anxiety to the transition.
Your parent will need time to adjust to his/her new living environment and role with your family. Your patience and support will help make this transition smoother. An outside counselor may also be helpful. For additional advice on moving your parent to a new living situation, see the FCA Fact Sheet Downsizing Your Home: A Checklist for Caregivers.
Despite the challenges, many adult children find that providing support and care for their parents is one of the most rewarding experiences they have ever had. Parents can contribute to the family through sharing their past and become an integral part of your household. Grandchildren have the unique opportunity to learn and absorb family history. Caregiving carries with it the extraordinary opportunity to give back what your parent once provided to you.
Elder Care Made Easier. Somers, M., 2006, Addicus Books.
How to Care for Aging Parents: A Complete Guide, Morris, V., 2004, Workman Publishing.
Moving for Seniors: A Step-by-Step Workbook, Morris, B., 2001, Smooth Transitions.
The Essential Guide to Caring for Aging Parents, Rhodes, L., 2012. Alpha Books (Penguin Group).
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
E-mail: [email protected]
Family Care Navigator: www.caregiver.org/family-care-navigator
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s, and other debilitating health conditions that strike adults.
FCA FACT SHEETS
Caregiving With Your Siblings
Community Care Options
Downsizing a Home: A Checklist for Caregivers
Hiring In-Home Help
Holding a Family Meeting
Legal Planning for Incapacity
Personal Care Agreements
601 E St., NW
Washington DC 20049
Administration for Community Living
U.S. Department of Health & Human Services
330 C St., SW
Washington, DC 20201
Aging Life Care Association (formerly the National Association of Professional Geriatric
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
P.O. Box 18369
Rochester, NY 14618
Locate Area Agencies on Aging and other resources
Online tool to help you “Find your path forward.”
Medicare and Medicaid
National Center for Assisted Living
Offers Choosing an Assisted Living Residence: A Consumer’s Guide
U.S. Department of Housing and Urban Development
Housing Counseling Agency
451 7th St., SW
Washington, DC 20410
Village to Village Network
Prepared by Family Caregiver Alliance. Reviewed by Brenda Klutz,B & R Klutz Consulting, LLC, formerly Deputy Director, Licensing and Certification, California Department of Health Care Services. Funding for this fact sheet update provided by Genentech. Last updated in 2012. © 2003, 2012 Family Caregiver Alliance. All rights reserved.