Caregiving can begin with a moment’s notice, as Beth discovered. Her elderly mother, widowed and living independently in the Midwest, had suffered a disabling stroke. Beth, the youngest of six children, willingly responded since she lived closer than her siblings did and felt capable of providing help. Once the health crisis stabilized, Beth moved her mother four hundred miles across the state and into her home with her husband and two preschool-age children. This is where she began her journey as a caregiver.
Initially, Beth felt confident about her new role as a caregiver for her mother. She wanted to offer the same love and support that her mother had given to her over the years. She optimistically assumed her mother would get well in a short time, would return home and continue living independently. All intentions were good and it seemed everything was going in the right direction. She hadn’t anticipated, however, the possibility of a second small stroke and pneumonia, the stress on herself, and her family or her mother’s need for on-going medical care and rehabilitation. Financial and legal issues were also unclear as Beth attempted to manage her mother’s affairs. Weeks turned to months and Beth and her family found themselves facing new and unexpected challenges.
As time went on, Beth now felt an uncertainty about her role as a caregiver. She noticed changes in her mother’s memory, patience, and daily moods. She also showed signs of depression and strongly missed her own home, church and social life amongst friends. It became clear that her mother was not happy living with her and coping with her family’s busy and often hectic schedule. Beth began to lose patience and noticed the effects on her own health, marriage, and ability to parent two young children.
The choice of providing care for her mother was also taking an emotional toll on the mother/daughter relationship. An unfamiliar role emerged as Beth found herself “parenting” her own mother and she felt very unsettled about her feelings. In addition, her mother faced the uncertainty of her own role in her daughter’s household as it related to meals, kitchen duties, and daily decisions. They were both caught in a struggle they were not prepared for as adults.
Six months of caregiving finally gave way to a difficult reality as Beth questioned whether she could continue to make sacrifices and care for her mother in her home. She began to struggle with her feelings of guilt, resentment and what was best for her mother, her own family, marriage, and needs as a mother and a young woman. She realized the life she once knew was slipping away and the time had come to reevaluate everyone’s needs.
Five siblings and their spouses, who were scattered across the country, were consulted on their mother’s future. Although each one cared and was well-meaning, there were ten opinions on what was “best for mother” and her personal affairs. Some believed their mother should return to her hometown and hire help even though it was hundreds of miles from any family members. Others felt that they could take turns caring for her by moving her from state to state and house to house. Assisted living was an option while others felt strongly that she should just remain at Beth’s house, indefinitely. It then occurred to Beth that she and her siblings had never planned ahead for their mother’s care after their father died and they’d never made a joint family decision prior to this event. Coming to a consensus was going to be difficult.
At this point, Beth conferred with a caregiver consultant who listened to her needs and concerns. She helped her gain a perspective of her situation, discussed care alternatives and connected her with several resources. Best of all, Beth was able to consider other possibilities for care outside of her home and was encouraged to visit local assisted living facilities. She also found the courage to discuss these options with her siblings and eventually gained additional support from them.
Soon, Beth took her mother to tour several assisted-living homes in the area. Some provided individual rooms while others offered full-size apartments. All of the facilities offered activities, meals, housekeeping and personal care assistance. Initially, her mother was extremely hesitant to consider moving and was unsure about leaving the familiarity of Beth’s home. In her mind, she was still planning to return to her own home and resume the life she had prior to the stroke. The family knew at this point that she could not return and agreed that the homestead had to be sold to help pay for their mother’s future care. They convinced their mother that moving to assisted living near Beth was the best plan “for now.” A beautiful apartment became available, but it took weeks for Beth’s mother to agree to actually move. Surprisingly, within days of moving into the apartment, she had made new acquaintances, joined exercise and coffee groups and had volunteered to play the organ for the church services (a skill that had miraculously remained intact after the strokes!).
The caregiving journey continues for Beth, yet she has gained valuable knowledge, coordinated communication between her siblings, made positive decisions with and for her mother, and rebalanced the needs of herself and her own family. An unexpected change also occurred when the focus on daily caregiving was exchanged for a focus on a loving mother/daughter relationship. To this day, Beth’s mother is thriving and remains socially involved at her assisted-living complex.
These important suggestions are shared with readers who may face a similar life-changing event.
Arrange for a family meeting either by conference calls or in person to discuss the care needs of parents, home care or housing options and how each family member can assist with the identified needs. A caregiver consultant or social worker may be used as a group mediator. It is strongly suggested that this meeting occurs prior to a health crisis, especially with large families, to promote communication, maximize care-planning options and minimize stress.
Include parents in the planning and decision-making process as much as possible. Encourage parents to begin their own life planning as a “gift” to the family before they are no longer able to make personal or legal decisions.
Seek support from community resources such as caregiver consultants, geriatric social workers, senior outreach programs, respite care programs, medical professionals or Area Agencies on Aging. Start with the Yellow Pages, do an Internet search or contact the local social service office.
Inquire about a trial or short-term stay at an assisted living facility if your parent refuses to consider a permanent residency. Some people hesitate to move because they think they will lose their independence when they often find the opposite to be true.
Discuss legal affairs and pre-plan if possible. This includes choosing an executor of the estate, completing wills and power of attorney, and preparing a health care directive, making property decisions (homestead, land, auto, etc.), financial planning (who will be named on parent’s accounts) and even funeral pre-planning.
Caregiving does not have to be done alone and asking for help is encouraged. Keep your own mental and physical health needs a priority. Understand that caregiving decisions are never easy and that your initial intentions and plans to provide care may need to change. Finally, give yourself credit for seeking options and attempting to provide the very best care and support for your parents.
By Kristine Dwyer