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Caregiving: When Our Parents Need Our Help

Most adult children do not initially see themselves as caregivers, and aging parents often do not see themselves as needing care. Often this changes gradually, starting with small acts of assistance. This guide will discuss issues to consider if you are faced with caregiving for an aging parent.

Last Updated: 02/16
by Sandra J. Bailey, Ph.D., CFLE, Family and Human Development Specialist, Montana State University-Bozeman

THE FASTEST GROWING AGE GROUP IN THE U.S.

is people in their 80s. With the modern health care, individuals are living longer than ever before. Women on average live five years longer than men, 79 years compared to 74 years. Most elderly adults are living on their own or with a spouse or family member – they’re not in nursing homes. This guide will discuss issues to consider if you are faced with caregiving for an aging parent.

Most adult children do not initially see themselves as caregivers, and aging parents often do not see themselves as needing care. Often this changes gradually, starting with small acts of assistance. “I’m just helping Dad out by cleaning his house since Mom died.” “The grandkids are mowing Dad and Mom’s yard as a way to earn some extra money.” An adult daughter living in a different state than her Mom might pay for her weekly trip to the hairdresser. These types of exchanges are common, and helping one another out is considered being part of a family. At some point though, we may be faced with providing caregiving that requires more of our time, resources and energy.

Addressing the Issue with Your Family

A family meeting with your adult siblings is the place to start. Set up a telephone conference call if siblings do not live near one another. Ask each person to share his or her thoughts about your parents’ needs. Often each sibling views the situation differently. A daughter who lives near Mom and has been gradually providing more and more care may view Mom’s needs very differently than the daughter who only sees Mom twice a year.

Agencies serving the elderly often receive calls around the holidays when adult children who live long distances from their parents have come home for a visit. These siblings may more readily see the decline in their parents. The opposite can happen too. The adult child who only sees Mom and Dad a few times a year might view them as getting along fine.

The next item to discuss is what assistance might be helpful for Mom or Dad. This could range from providing services such as housecleaning and grocery shopping to personal care needs such as dressing and bathing. Siblings also need to determine whether or not the family will hire someone for these services or try to provide them within the family. Paying for services means that you are managing care. Providing the services yourself is called direct care. In both cases you are still caregiving. You are just providing the care in a different way.

After the sibling family meeting is held, parents should be involved in another meeting with the family members. Respecting the dignity and independence of the aging parent is critical. Ask Mom and Dad what they think they need. If the adult children see that more care is needed, gently approach the subject in a loving, concerned way. Involving a health care professional or spiritual advisor in the discussion may be helpful. In this way, a third party can offer another view.

Once the care needs are established and agreed on by both the parents and adult children, research the resources available in your area. Contact your Area Agency on Aging, information and referral services, local hospital, and long-term care facilities to see what services your family can access. Find out the cost of the services and determine what care your family can afford to pay for and what care family members will provide.

When Family Members Disagree

Not all families are close or have good communication skills. Realizing that one’s parents are nearing the end of their lives causes sadness, fear, and grief. Talking about caregiving can open up old “wounds” and start new rivalries. A sibling who feels he or she was slighted growing up may not want to help. Siblings who are competitive may try to control the meeting and decision making. Family member anger and resentment can surface during this time.

In these cases, the siblings need to come together and set up ground rules for discussion. This may sound formal, and it is; however, it can be helpful if there is conflict or animosity among siblings. Ground rules may include: everyone has a valid perspective, no issue is too small, and we will stick to talking about the issue at hand. Ask each family member to agree to abide by the ground rules. This will assist in keeping the conversation on track. Focusing on common goals related to the care of your parents assists your family in establishing favorable communication.

Work on controlling your own reactions during conversations with family members. Avoid responding when a sibling tries to “push your buttons.” When family discussions become heated or argumentative, suggest taking a break and regroup for a meeting at another time. If siblings cannot cooperate, consider asking a healthcare provider, care coordinator who works with families, or a spiritual advisor to lead the conversations.

Providing Care: What are the Options?

There may come a time when a parent is unable to live on his or her own. At that point the family must look at other care options. Fortunately, there are more options available today than there have been in the past.

Senior Independent Living is popular. In this setting the resident has his or her own apartment or house in a senior complex that may include such amenities as weekly housekeeping including linen change, meals served in a central dining room, and activities for the residents. An older adult can also find friendship and activities to keep them active and alert. Some offer transportation services to healthcare appointments and shopping.

Assisted Living is an option for the parent who needs more care than can be provided in Senior Independent Living. Usually the resident has his or her own room or efficiency apartment. Some assisted living facilities are located in private homes where the residents live with a family and a few other elderly adults. This setting will likely include the services listed above in addition to providing assistance with dressing, grooming, and receiving required medication. Some assisted living facilities have special units for Alzheimer’s or dementia residents. The level of care in an assisted living facility usually depends upon the needs of the resident. The cost of care varies by facility and is partially based on the level of the resident’s needs. This national website discusses costs of care: http://www.skillednursingfacilities.org/resources/nursing-home-costs/

Licensed Nursing Facilities offer the most in-depth level of care – a licensed nurse is available 24-hours a day. Typically this type of care is in an institutionalized setting and residents share a room or have a single room. A full range of care is offered in a licensed nursing facility. In addition to those services already discussed, residents receive assistance with bathing, toileting, monitoring medications, and, if needed, assistance with eating. Activities are provided. Residents are checked on throughout the day by staff.

Licensed Adult Day Centers are another type of facility that is becoming more popular. These day centers offer a safe place for elderly adults to go during the day while their adult caregivers are at work or taking care of other obligations. This works well for families who are providing care at home for an elderly adult who is unable to stay alone. Adult Day Centers often take dementia or Alzheimer’s individuals as well as older adults with other needs. Meals and daily activities are typically available.

All of the facilities have guidelines for admitting an individual. Families can make informed choices for their loved one by visiting different types of care facilities and learning about what is offered at each one. The following questions will assist you in your decision.

Can my parent dress him/herself?
Can my parent groom him/herself?
Does my parent still drive or have the ability to ride a bus without assistance?
Does my parent still have a spouse or partner?
Can my parent monitor his or her own medication?
Can my parent still fix simple meals?
Is my parent widowed and lonely?

If you answered “yes” to the questions above, then your parent may want to explore Senior Independent Living Facilities.

Does my parent have Alzheimer’s or dementia?
Does my parent need help getting dressed?
Does my parent need help with daily grooming?
Does my parent need someone else to prepare meals?
Does my parent need help taking medications?

If you answered “yes” to these questions, then you may want to look at Assisted Living Facilities.

Does my parent need constant care?
Does my parent need assistance with eating?
Does my parent need assistance with bathing?
Does my parent require an IV?
Does my parent need assistance with dressing and grooming?
Does my parent need assistance with toileting?
Does my parent need help with taking medications?

If you answered “yes” to these questions, then you and your parent might also explore Licensed Nursing Home options.When exploring these living options for your parents, visit facilities and ask questions.

Is the facility licensed with the state?
What services are offered?
Are there fun activities for the residents?
Are all services included under one flat fee? If not, what are the extra costs and how much are they?
How and when are meals served?
How often are linens changed and apartments/rooms cleaned?
What is the ratio of staff to residents?

Talk to residents to get their thoughts on the facility. Ask to see the various types of apartments or rooms. Talk to the staff and observe how they interact with the residents. Look to see if staff seem to like their jobs. Request a menu for the week and if possible, stay for a meal.

More information on care facilities can be found at: https://www.medicare.gov/nursinghomecompare/Resources/Nursing-Home-Alternatives.html.

Hiring In-Home Help for Your Parents: Some families hire an in-home caregiver to provide assistance to aging parents. This option may be used for needs limited to helping a parent with dressing and personal needs in the morning, and perhaps helping at mealtime. At other times a caregiver may be hired to live with the parent on a fulltime basis. Finding someone who is qualified and affordable can be challenging. The family becomes an employer in this situation and will need to be familiar with Montana and federal rules on worker’s compensation and other employment laws. Montana information can be found at: http://erd.dli.mt.gov/labor-standards/wage-and- hour-payment-act.

Caring for a Loved One in Your Home: Another option is to care for your parent in your own home. For some families this may be the only option that is financially feasible. If you choose this option, consider it carefully. Think about the amount of care your parent needs.

Can you provide the amount of care he/she will need by yourself?
Are you physically able to provide the care?
Will you or your spouse/partner need to quit working to care for your parent? If so, how will this impact your family’s financial situation?
Consider what space is available – is there a room available for your parent or will your child have to give up his or her bedroom?
Think about the changes in family dynamics. Will your children enjoy having Grandmother around the house or will they resent it? Talk to your children to see how they feel about Grandma or Grandpa moving in.
Will you be able to emotionally handle the task of caregiving?
Will your parent have enough activities to keep him or her stimulated?
Is respite care available so that you and your family can have a break from caregiving?

Be aware that there is a medical deduction allowed for in-personal care:

Workplace Benefits for Caregivers

Dependent care is becoming a more popular workplace benefit for some employees. Check to see if you are able to use annual, sick or family leave time to care for your parent. Discuss with your employer what time will be needed away from work to do things such as taking your parent to doctors’ visits. Ask if flex time is available so you can come in early and leave early on days when you need to assist your parent.

Businesses that employ more than 50 people are required by federal law to provide Family Medical Leave. The leave time is not necessarily paid time off to care for a loved one. Some employers allow employees to use sick leave, personal days, or vacation leave to care for a loved one.

Taking Care of Yourself

Caregiving for a parent, whether you manage the care and pay for services or provide direct care yourself, is stressful. Remember to take care of yourself. We often view stress as something that is emotional; however, stress can greatly affect physical health. Caregivers often disregard their own needs as they try to provide for their loved ones.

Remember to take time for yourself. Build into your schedule time for small breaks during the day and longer breaks on days off. Do activities that you enjoy. Engage a friend or spouse to remind you to take this time out.

Find someone to stay with your loved one while you take a break. This is called respite care. The Montana Department of Public Health and Human Services Lifespan Respite Coalition offers vouchers on a sliding fee scale to assist caregivers in paying for respite. For information on assistance in locating and paying for respite care go to http://dphhs.mt.gov/respite .

For more information on caregiving contact your county Extension office. MSU Extension offers a six-week program called Powerful Tools for Caregivers and a five- week program called The Alzheimer’s Caregiving Series. These programs are specifically designed to help caregivers learn self-care. Ask if these programs are available in your community.

Additional resources

AARP: www.aarp.org

American Society on Aging: http://www.asaging.org/

National Alliance for Caregiving: http://www.caregiving.org/

Federal Family and Medical Leave Act: http://www.dol.gov/whd/fmla/

Montana Department of Public Health and Human Services: http://www.dphhs.mt.gov/sltc/index.shtml (406) 444-4077

Montana State University Extension: http://extn.msu.montana.edu/

National Center for Life Expectancy fact sheet on life expectancy: http://www.cdc.gov/nchs/fastats/life-expectancy.htm

National Center on Caregiving: https://www.caregiver.org/national-center-caregiving

Life Expectancy Table: https://www.health.ny.gov/health_care/medicaid/publications/docs/adm/06adm-5att8.pdf

For further reading:

Meyer, M. M. & Derr, P. (2002). The comfort of home: An illustrated step-by-step guide for caregivers. Portland, OR: CareTrust Publications.

Legacy Caregiver Services (2006). The caregiver helpbook: Powerful tools for caregivers. Portland, OR: Author.