The phone call from my brother was like a jolt of disbelief. It had been two days since anyone had heard from our mother, and now he was telling me that he had found her in a terrible condition, lying on the floor.
Editor’s Note
To commemorate National Family Caregivers Month in November, I’ve revisited the following article, initially published in 2016, which delves into Alzheimer’s and caregiving.
Although the article dates back seven years, it still addresses the pressing issues that many seniors and their families encounter. For caregivers with disabilities, these challenges take on an additional dimension.
On a personal note, I consider my mother exceptionally fortunate for her remarkable recovery following a fall, enabling her to return to the community after a two-year stay in a nursing home. Despite a setback in 2020 that necessitated her return to a skilled nursing facility, her resilience continued to shine.
Within this piece, I share my experiences and insights into the unique challenges I faced after her fall. It is my hope that the recommendations offered at the conclusion of the article will prove valuable to others in similar circumstances. ~Steph
The Extended Path to an Alzheimer’s Diagnosis
Twenty years ago Alzheimer’s took my grandmother and now my mother has been diagnosed with it. Though the contrast in how the disease manifested itself between my grandmother and mother was significant, after consulting with my mother’s physicians, it seems that 13 years ago, the clock began ticking for my mother.
While my grandmother endured the most severe symptoms of Alzheimer’s for approximately five years before her passing, the disease advanced at a slower pace in my mother. A mixture of fear, denial, and her disability played a role in my mother’s steadfast resistance to being evaluated for any signs of Alzheimer’s. Ironically, these factors enabled her to maintain her independence until just three months ago.
The Complexities of Dystonia, Medications & Cognition
In the 1990s, my mother was given a diagnosis that might have played a role in her current condition. Dystonia, a movement disorder, inflicted severe pain and contorted her body, pulling it to the left. To her credit, she opted not to use a wheelchair and, instead, depended on a walker to maintain her mobility.
When I discussed my concerns about some of her unusual behaviors with her primary care physician, he recommended a potential medication adjustment. Unfortunately, my mother’s reluctance to allow me to communicate with her neurologist posed a challenge, and as a result, the delusions persisted.
Although my mother’s Alzheimer’s was not directly caused by her medications, it’s important to note that certain medications affecting the central nervous system can potentially lead to side effects or interactions that impact cognitive function. In her situation, neither Dystonia nor her medication can be pinpointed as the cause of her Alzheimer’s, but we suspect that some of the medicines she was taking for her Dystonia may have contributed to her cognitive decline.
There were numerous instances when our family struggled to reassure her that no one was remotely controlling her refrigerator, heating, or air conditioning. She frequently dialed 911 due to imagined gas leaks or an overheated oven. The issue of phones also surfaced, as she repeatedly purchased new landline phones, believing something was perpetually “wrong” with them. She also expressed concerns about individuals using her credit card to order food from her apartment.
“Sundowning,” a condition characterized by symptoms of confusion that tend to worsen in the evening, was a term I had never encountered until Mom’s landlord contacted me. He expressed concern because she was reaching out to him late at night for peculiar reasons. Drawing from his own experience with his mom’s Alzheimer’s, he suggested that my mom might be going through this phenomenon, as her episodes primarily occurred in the evening.
A Helpless Journey: From a Desperate Call to the Emergency Room
The phone call from my brother was like a jolt of disbelief. It had been two days since anyone had heard from our mother, and now he was telling me that he had found her in a terrible condition, lying on the floor. She had fallen and, regrettably, was unable to get back on her feet. It was a chilling thought that she had remained in that helpless state for a day and a half until she was discovered.
As I made the anguished journey with my son to the emergency room, a rush of emotions overwhelmed me. Despite the historically contentious relationship I had with my mother, when she needed help, I had always been there for her. However, my own life had taken a dramatic turn, and I now felt utterly helpless in the face of her suffering.
A few years ago I lost my eyesight to macular holes and a simultaneous diagnosis of primary open-angle glaucoma. While I have adapted to my legal blindness, navigating the extensive hospital hallways would have been quite challenging had it not been for my son guiding me. Upon entering the emergency room (ER), I heard my brother calling out to me, but I couldn’t discern from which direction his voice was coming.
ER Visit that Unveiled a Frail Reality
The most unsettling aspect of the visit to the ER was when we were permitted to see our mother. Despite my limited sight, I was deeply alarmed and fearful of her frail appearance. She could hardly speak, seemed very disoriented, and was in considerable pain. If I had any doubts about the seriousness of the situation, they were swiftly dispelled when her doctor mentioned that, due to her age (78) and condition, her survival was uncertain.
Nevertheless, despite her severe dehydration, lethargy, and delusional state, she survived, and following a week of hospitalization, our mother was discharged to a skilled nursing facility for rehabilitation. It was during this rehabilitation period that her diagnosis of Alzheimer’s was confirmed.
Clearing the Path Forward for Mom
Now that our mother was settled in the nursing home, my brother and I could proceed with emptying her apartment, organizing her affairs, and collaborating with the social workers and staff to establish a comprehensive care plan for her. Leveraging my extensive background in administration, research, and advocacy, I managed tasks involving phone calls, paperwork organization, and legal matters, which, despite being time-consuming, were relatively manageable even though I couldn’t see well.
Before my mother’s admission, my brother and I had no idea of the extent of the issues at her apartment until we were given the freedom to clear it out for renting. It took a couple of weeks to dispose of or donate a significant amount of belongings. Looking back, it was intriguing how, apart from the peculiar and paranoia-fueled phone conversations, she had been quite discreet about concealing some of her shortcomings. Being a rather controlling individual, she had established various “systems” to manage and track information.
Unraveling the Tapestry of Alzheimer’s
It became evident from numerous pieces of documentation that my mother struggled with remembering personal details such as her name, birth date, and social security number. As a result, she amassed a vast collection of address labels and assorted stickers, a significant portion of which she affixed to walls, furniture, books, and various other items.
Through thorough examination of extensive paperwork, I managed to uncover a troubling pattern concerning her finances. This included recurring banking and debit card errors, where she often attributed mistakes to the bank or retailers, as well as an excess of mail orders and subscriptions. However, it’s worth acknowledging that her detailed records of medications, phone calls, and to-do lists played a crucial role in anchoring her to reality.
Any uncertainty about the Alzheimer’s diagnosis was dispelled by her erratic behaviors and occasional unreasonable demands while at the nursing home. Given my brother’s extensive travel requirements for his job, the responsibility of maintaining a peaceful environment fell on me. Initially, this involved the use of daily paratransit service for transportation to and from the facility.
The Nursing Home: Building Connections, Finding Comfort, & Advocacy
During the initial weeks, I dedicated a substantial amount of time to being with my Mom at the skilled nursing/long-term facility. Each day, I accompanied her to therapy sessions, meals, and immersed myself in the daily schedule. I also introduced variety by taking her to different areas of the facility for a change of scenery, and I handled the task of collecting and delivering her laundry.
Understanding her sometimes challenging nature, I recognized the immense value in building strong relationships with the nurses, doctors, therapists, and aides. Consequently, we reached a point where we were on a first-name basis. The only minor hiccup was my initial unease whenever I approached the nurse’s station because I couldn’t visually identify who was at the desk.
Once my mother acclimated to her life as a long-term care resident, we successfully arranged for her relocation into a private room. This transition lightened the load for my brother and me, as it allowed us to reduce our visit frequency and take turns attending to her needs.
Mom’s Final Journey
My mother passed away on the evening of April 30th. In December 2022, she had come to stay at my home for hospice care. During her final months, although it presented many challenges, it was a profound privilege to be her full-time caregiver while she was in hospice. Throughout her final journey, I gained valuable insights into strength, life, death, and love.
Helpful Caregiving Suggestions
- Gain a comprehensive understanding of Alzheimer’s by exploring valuable resources. The Alzheimer’s Association, available at www.alz.org, offers a wealth of informative materials and is an excellent place to start.
- Please be mindful that unless your loved one poses a risk to themselves or others, there may be limited options for intervention when dealing with their unusual behaviors without their consent.
- Ensure that both medical and financial power of attorney documents (POAs ) are properly signed, witnessed, or notarized, and securely stored in a designated location.
- Plan ahead for “do not resuscitate” (DNR) decisions. For instance, I was unaware, until it was explained to me, that resuscitation can be quite painful for older individuals and may lead to broken ribs, necessitating hospitalization and the use of a respirator.
- Maintain a dated journal documenting your interactions with your loved one. This resource will prove invaluable when communicating with medical professionals. I’m thankful for having maintained this ongoing record for reference.
- Upon your loved one’s admission to a facility, be sure to request a copy of their medical records and verify their accuracy. It is crucial to rectify any misdiagnoses to ensure they receive the appropriate healthcare.
- Familiarize yourself with the facility’s layout to ease navigation of the structure.
- Select a primary contact and an alternate for the facility to reach out to with any questions or matters related to your loved one’s care.
- Establish a positive relationship with the staff at the nursing facility, which includes nurses, aides, doctors, social workers, and supervisors.
- If you’re at ease with it, openly communicate your vision challenges to help others comprehend potential difficulties you might encounter, such as requesting directions to the restroom.
- Inquire about various aspects, including medication schedules, the types of medications administered, mealtime routines, therapy sessions, bedtime schedules, and planned activities.
- Inquire about the expenses associated with care and the financial arrangements within a facility compared to alternative options like in-home care or other senior programs.
- Inquire about the possibility of short-term leaves for nursing home residents. Generally, a doctor or nurse practitioner’s approval is required when a loved one temporarily leaves the facility to visit with family.
Additional Resource
- Caregive Action Network (CAN) provides additional tips in their: 10 Tips for Family Caregivers
Image Descriptions
- The header consists of a family (mother, daughter, and son-in-law are looking at tablet discussing caregiving options.
- My mom diagnosed with Alzheimer’s is at the nursing home sitting in her wheelchair. She’s posing with her sunglasses and a colorful scarf tied around her neck.
- Upset woman on the phone receiving bad news.
- A loving mid-adult African American woman embraces her elderly mom who is in a nursing home.
- Bed at a nursing home with a nurse and wheelchair in the background.