One story cannot completely define a person’s experience when it comes to the difficulties associated with caring for our elderly loved ones. We feel sad, frustrated, and confused from not knowing what to expect while simultaneously asking ourselves if we’re giving the best to those we love. Perhaps this last question is the common thread that connects all of us who may be caring for an elderly loved one. Although I am not a caregiver, I have witnessed caregiving firsthand when both my mom and dad cared for their respective mothers. Even though my parents’ specific caregiving experiences were unique, they both expressed the same feelings listed above. For those of you who may be going through a similarly challenging period, I can hardly imagine the responsibility that you have had to face daily. But based on my experience as a granddaughter and the assistance that I’ve offered along the way, I hope that my story, though different from yours, can be helpful in some way.
My dad’s father passed away when I was six years old. At the time, I didn’t understand the level of responsibility that was then placed on my dad as the eldest of two children and the only son. After my grandfather’s passing, my dad assumed responsibility for my paternal grandmother and served as her health care proxy while she fought dementia and uterine cancer for the last 10 years of her life. My grandmother resided in Long Island, New York, which complicated her care because she could only draw upon a limited number of family members for help. Furthermore, it was financially impossible to afford the 24-hour supervised “at home care” my grandmother needed, so my dad made the difficult decision to place her in a long term care facility (nursing home). Eventually, we also emptied out and sold her home to meet the financial challenges related to her care.
In general, navigating the healthcare system requires constantly looking for the fine print to ensure that you are not missing any loopholes that could potentially cause setbacks in the care you seek. My dad was frustrated at times, in part because the cost of care for my grandmother did not seem to reflect the level of care provided by the nursing home. Initially, too many patients per health care provider, also known as understaffing, made it difficult to obtain general information regarding my grandmother’s care and well-being over the phone. Understaffing also led to rushed care, which manifested as neglect towards my grandmother’s hygienic needs.
In response, my father would immediately address the issue firmly but kindly. At first, I couldn't understand how he could handle these matters with such patience. I was extremely upset and was even more concerned about her state when we were not around to see it for ourselves. But he would always respond, “The reason I act the way I do is because no one receives constructive criticism with a destructive tongue. In all things, handle it with firm kindness and it will encourage that person to do it right the second time.” My father arranged for a meeting with the caregivers responsible for my grandmother’s care, and he voiced his concerns and the need for immediate rectification. To ensure the nursing home staff satisfactorily addressed the matter, my aunt would pay surprise visits to the nursing home, followed by detailed reports to my dad regarding the status of their mother's care.
Many patients and their families face understaffing and several other issues common in long-term care facilities. In “My Mother Doesn’t Like her Nursing Home,” an affiliate with the American Association of Retired Persons (AARP) discusses typical concerns like lost items and roommate conflicts within the nursing home and provides strategies on how to tackle these issues appropriately. She suggests the following steps that could be a useful tool in avoiding and/or addressing any issues that may occur:
Investigate before complaining to the staff about the issue
Try to establish good relationships with nursing staff and aides
Get involved in the nursing home
Do not miss important meetings
Be observant and diligent in reporting serious declines in care.
Like at the beginning of life, at the end of life, we are dependent on others. Both of my parents agree that this concept—“we revert to where we began”— is the hardest to grasp for an elderly person. “The hardest thing for me was to watch my mother lose her independence. She was a very independent woman who took a lot of pride in maintaining her home and more importantly, her kitchen,” my father said. “She took pride in caring for her home and her family. During the initial stages of her diagnosis, I had to introduce her to a lifestyle that was completely different from anything that she had ever known the greater portion of her life.”
Like many elderly people, my grandmother struggled in the early years in the nursing home, a common phenomenon I have seen having worked in nursing homes for more than two years. My grandmother had difficulty adjusting to a place unknown to her, surrounded by those who weren’t her family, and would challenge the staff. She was reluctant to follow their directives, like washing her hair or cutting her nails, because she wanted to follow her regimen the way she had always followed it. When we would bring her home for the holidays and on special occasions, she would plead with my father to let her stay at home instead of returning to the facility.
Explaining the reasons behind these lifestyle changes to an elderly person is a common challenge for families with aging adults. Depending on the facility and the patient’s medical diagnosis, the patient’s freedom to make major decisions can be limited. Each elder’s personality and coping mechanisms are different, and for my family, we leveraged trial and error to see which strategy worked best in providing a calm and open environment for my grandmother. We often had to remind her that her illness required her to be in a long-term facility, but we learned that when dropping her off at the facility, leaving her with a date for a return visit made our departures less dramatic and reduced her feelings of abandonment.
Most individuals going through this difficult stage need a confidant to whom they can vent, which brings them comfort and reassurance that they are being heard and that what they are saying matters. “Care Conversations: Transition to Care” describes what to expect on the first day, first week, and first month in your elder’s facility, how to help your elder feel more at home, how to handle negative comments by a frustrated loved one, how to plan care meetings, and more.
On the other hand, my mother has had a very different experience caring for her mother, who is currently managing several health challenges. “I am truly blessed that my mother’s health is as good as it is at 80 years old, even with the challenges of heart disease and diabetes. Mother receives excellent health care and in all honesty if it wasn’t for that and family, I don’t think she would be the same woman,” my mom said to me. “When mother needs us, your aunts and I are right there. That's why she is always in such good spirits, even during those times when she is ill. She knows that she can depend on her daughters to be there to help her get through anything.” My mom is not my grandmother’s health care proxy, but she and my aunts work as a team to ensure appointments are kept, shopping needs are met, and medications are disbursed properly.
When my maternal grandmother’s health started to fail, she was afforded the opportunity to move in with her daughter (my aunt) and son-in-law. Initially, she fretted over being an imposition but soon came to terms with her new situation. Today, it is clear that this arrangement gives her comfort, support, and peace of mind. Fortunately, it has also brought about a significant improvement in her overall health. In her case, she had a smooth transition and has not faced any serious issues that require around-the-clock care. Her children and grandchildren all live close by and can provide any assistance. In other words, help for her is not hard to find.
“Engagement for the Elderly: Why social interaction is crucial” argues that when communication with others is not maintained, cognitive function begins to rapidly deteriorate. Social isolation, boredom, and loneliness are commonly experienced among the elderly, which in turn perpetuates the decline of self-worth because an elder can feel unwanted or not needed. However, when social interaction becomes routine, not only among caregivers but also with friends and family, a positive correlation emerges between social interaction and health. Unlike my paternal grandmother, my maternal grandmother can still physically participate in rituals and traditions, such as making the Thanksgiving turkey, which helps her feel like she has a necessary role within the family. Health-related issues that benefit from social interaction include: cardiovascular problems, cancers, Alzheimer's/dementia, and other mental health and personality disorders.
The love and assistance of my aunt’s and my family has played a major role in how my maternal grandmother manages her health challenges. “Just like a newborn baby, aging people need the same amount of love, touch, attention and affection, they need to be surrounded by loved ones and family,” my mom said. In a perfect world, I wish more than anything that I could have given my paternal grandmother that same loving village that supports my maternal grandmother every day. During family gatherings, my father watches my mother’s family fuss over my maternal grandmother’s well-being, and I know he wishes his mother had that same level of attention. Without success, he tried to move her to Massachusetts to be closer to family, but between the progression of her illness, the logistics of moving her from one state to another, and the wait lists for admission to quality care nursing homes, the process became unmanageable.
Know that you do the very best you can. As woman and men, we often put other’s feeling before our own well being. Women who are mothers, wives, and caregivers to their aging family members have it especially hard. However, in order to offer care to someone else successfully, it’s imperative that you stay on top of your own physical and mental well being. “Managing stress when caregiving provides strategies and advice for coping with stress and underscores the importance of self-care. Strategies include asking for help when you need it, talking with a friend or a counselor, taking time out of your day to pamper yourself, and making time for hobbies or activities that you find enjoyable or calming.
Both of my parents agree on the importance of spending as much time as you can with your loved one and letting them know that they are loved, needed, and important to you. At our recent Community Conversations: Sister to Sister session in Nov. 2016 on elderly care, a speaker said, “As a caretaker you don't have to be a hero, because that is not what it's about. Get the help you need and don't feel guilty to ask for help.” Though the road is hard, it is important to stay encouraged, to do the absolute best you can, and to take it one day at a time.
"Care Conversations: Transition to Care." Care Conversations. American Health Care Association/National Center for Assisted Living, 2016. Web. 06 Dec. 2016.
Heffernan, Carol. "Managing Stress When Caregiving." Managing Stress When Caregiving. Focus On The Family, 2007. Web. 06 Dec. 2016.
Jones, Derek. "Engagement for the Elderly: Why Social Interaction Is Crucial." Griswold Home Care.com. Griswold Home Care, 13 Feb. 2012. Web. 06 Dec. 2016.
Levine, Carol. "My Mother Doesn't Like Her Nursing Home." AARP.org. AARP, 19 Sept. 2012. Web. 06 Dec. 2016.
"Living Wills, Health Care Proxies, & Advance Health Care Directives." American Bar Association . American Bar Association , n.d. Web. 09 Feb. 2017.