How many of us as health care professionals have heard these words from a patient, beneficiary, resident, or loved ones as we strive to manage the COVID-19 pandemic? I write these thoughts as I am dealing with the emotional roller coaster and isolation my mother has experienced through the changes demanded of her as a resident in a skilled nursing center.
As our parents grow older, we do not always see or want to accept that, eventually, they may require 24-hr care and that they will have to give up being independent and living in their own homes. My mother is like many frail seniors with multiple comorbidities, loss of gait and balance, limited vision due to macular degeneration, and hearing loss (she hates her hearing aids, and most of the time does not wear them) and is living with short-term memory loss. Last August, she experienced five falls within a week and was hospitalized with significant hypertension and cardiac issues. From the hospital, she transitioned to a rehabilitation center, keeping her hopes that she could return to her home. After 3 weeks of physical therapy, she was told she was not safe to return home. She was not going to be able to walk safely even with a walker, and she became a resident in the skilled nursing side of a wonderful care center.
My mother had a rough adjustment period. But she was able to make that adjustment through her loving family's weekly visits, taking her to her doctor's appointments, having lunch with her once a week, and picking her up to spend family time with us at home. On March 11 of this year, everything changed again. I was to do a care conference with her at the Care Center, and as I entered the building, I was told the facility was on lockdown. They were not allowing any visitors, and the residents could not leave. I had to tell my mother this news over the phone, which is difficult with her hearing loss. The case manager on the floor went to her room while we talked to help clarify the reasons for this change, offer assurances, and help support my mother through another transition.
My mother heard the words COVID-19 virus and pandemic, the need to wear masks, wash your hands, and observe social distancing. But she never understood what "social distancing" would mean, as she could not see her children, grandchildren, or great-grandchildren until several weeks later. For her, this turned into social isolation, absent of contact with her family, church family, friends, and pastor. Everything within the center came to an immediate halt, no activities, visitors, or church services. Familiar staff became masked caregivers going in and out of her room, providing little information about the crisis. This period was the first-time my mother said to me, "I feel so alone. I sit all day in my room and wheelchair looking out a window just thinking and thinking."
My mother receives excellent care at the center. The staff is amazing, but they are not her family. Like many others, she lost one of the last things that gave her joy and pleasure. Over 3 months, my mother has experienced loss resulting in depression and frustration of what the future may hold. Making this worse is her inability to read and hear. The staff place weekly facility bulletins on her table to read. Of course, that is not going to happen with her vision loss. As her advocate, I get the same updates and read its contents to her over the phone. But this is also a struggle because of her hearing loss. So, she repeatedly tells me, "I have no idea what is happening. I am just being kept in the dark."
I began to wonder how many other seniors are experiencing social isolation brought about by "social distancing" recommendations. I not only refer to those in long-term care centers but also refer to people quarantined at home and isolated from friends and family. I contend that the phrase "social distancing" is a misnomer. The use of the term "physical distancing" may well have helped prevent the phenomenon of social disconnection that has sadly become a routine part of life with coronavirus. How many seniors, isolated from family and friends and unable to drive, are dealing with food insecurity, access to medications, mental health issues, or lack of financial support? We must identify creative ways to remain connected with each other during this pandemic.
As I finish this article, it is the Fourth of July. I just spoke with my mother. She sounds ready to celebrate, dressed in red, white, and blue and wearing her special 1776 necklace. She was looking forward to enjoying a hot dog at lunch. She paused and said, "You know this was always a special holiday in our family [horizontal ellipsis] but not so today."
All those little remarks tell me how isolated and lonely she is and how difficult staying positive has become.
Over these last 4 months, I learned new and creative ways of staying connected with my mother, keeping her informed, and giving her things to look forward to. I am sharing a few of these interactions. If you find them helpful, you may want to try them with your patients, beneficiaries, residents, clients, and family members:
* I used FaceTime visits with my mother, which the care center offered to help families stay connected with their loved ones. Most post-acute care facilities have iPads or computers that support such interaction/visit. The care center also provided an exclusive e-mail address to which families could send personal messages. The care center prints these messages and distributes them to residents.
* I see my mother weekly by going to the window of her room and talking on the phone. She can see me through the window, and this has lifted her spirits. If your facility allows this, be sure to share it with your families.
* I encourage our families to send cards and packages to the facility and remember calling their grandmother every so often. I remind the staff at the care center to please read each card and letter to her. Be sure to share with your families how to stay connected with their loved ones.
* Every week, I take my mother's favorite snacks to the care center for the staff to bring to her. She loves mini muffins, goldfish crackers, Hershey chocolate bars, and Oreo chocolate-covered cookies. I share this because these items are her specific preference. Her attitude brightens, and I hear the uplift in her voice when she receives them.
* My mother has a strong Christian faith. She needs to hear the words of Scripture and share it in prayer, which we do over the phone.
* My love of music and ability to play the piano is the gift of many music lessons my parents gave me, starting at the age of 5 years. On Mother's Day, I called my mother and played her favorite song, "Fascination," into the phone. We underestimate the power that little things make. But when your day is confined to a bed or wheelchair, these things make all the difference.
* Remember that our loved ones, and all long-term care residents, want and need information about why the pandemic and related events keep them in quarantine status. Share that information!
* A certified nursing assistant (CNA) or RN walking in and out of a room who does not take the time to talk with residents misses precious opportunities to alleviate unspoken fears and providing facts. This action represents much needed emotional and mental health support.
* Be sure to advise family and friends on ways to interact with loved ones and provide periodic communications on the facility's status.
I hope each of us remembers this statement from a senior: "My body may be frail, and it doesn't do what I want it to do, but I have 24 hours a day to think and believe me, thinking I do." No matter if it is a loved one, patient, beneficiary, resident, or client, we can help provide a positive word in this difficult time to ease the burden of just thinking and thinking, 24 hr a day.
As I close this piece, I wish to thank all the health care professionals addressing the care, issues, and concerns of patients, beneficiaries, residents, and family members through this pandemic. Their sacrifices are personal exposure to the virus and becoming a surrogate family to our loved ones. This new level of caring should not be overlooked or underestimated. These are gifts given freely but not without cost. Their actions are taking a toll on them on many levels. These historical times are difficult and pose hardships beyond which many of us trained. We are a formidable force dedicated to improving care. We will not be deterred from our caregiving mission-regardless of whether a physician, pharmacist, nurse, social worker, case manager, care manager, community health worker, or CNA.