Six years ago my mother was the primary caregiver for her elder sister. At the time she was eighty-six, and her sister was eighty-eight. Her sister’s health had been slowly declining, with increasing difficulty in her ability to manage not only her activities of daily living – mobility, hygiene, dressing, but also other tasks such as grocery shopping and meal preparation. Their time together up until then had been both pleasant and successful. However, as my aunt’s short term memory began failing with the onset of dementia showing, their relationship suffered. My mother could not understand why Lil couldn’t remember what they had just agreed upon, and Lil, when challenged about her failing memory, would become angry and verbally abusive.
The situation hit the breaking point when my mother feared for her safety and dialed 911. When my sister and I found out about the state of our mother’s relationship with her sister, we were compelled to step-in. My sister took on the challenge of finding an appropriate longer term care facility for our aunt. Happily, she’d worked for the same employer virtually all her adult life, and had a reasonable retirement income, and perhaps more importantly, excellent long term care insurance. Finding an appropriate long term care facility was not too difficult given her financial situation.
I faced a more challenging situation. My mother had also worked her entire adult life, but had moved from one temporary job to another. Those positions had not included any long term benefits. Furthermore, her one long term employer, a small art college, had offered very little in the way of retirement or long term health care benefits. In short, all my mother had to work with was her social security benefit, and later, state benefits for her health and housing (Medicaid). It was our good fortune that while in training as an RN, I’d had the opportunity to visit a number of assisted living facilities within a short drive from my home, and not too far for my sister to drive when she wanted to visit. After a review of the available long term care facilities within reach of my mother’s budget, we settled on the one that offered the best combination of services and social programs for our mother.
The Move to Long Term Care
The physical move, about 50 miles from her old apartment to the new long term care facility, wasn’t too challenging, except for my mother’s upright piano. Having played all her life, that was the one item that she felt she needed to keep her feeling good about herself. Since neither my brother-in-law nor I were interested in adding piano moving to our resumes, we found a firm to accomplish that move (if I remember correctly, about $200), the rest of her possessions my sister and I moved into her new apartment.
After relocating to long term care, the first challenge for my mother was getting to know her new neighbors. This went fairly smoothly, or so my sister and I thought. One aspect of my mother’s personality is her profound desire to avoid any confrontation. She’d told me in past conversations that her approach potentially confrontational situations was to “smile, nod my head, and then do as I wanted.”
Transition to Long Term Care and Discoveries
I ran across this behavior on numerous occasions as my mother would agree with plans, and then ignore them, or actively, but surreptitiously, subvert plans. Since our contact was mostly by phone it was easy for her to do as she pleased in most situations. I would only find out after the fact that she’d made contrary decisions and had acted on her whims, which were not necessarily in her own best interest. This tendency put her in the hospital twice after falls that were initiated by her failing to use her walker or cane as her gait became increasingly unsteady. I know in my experience as a nurse that this is not an unusual behavior. I’ve had numerous patients over the years who would say, “I hate using that thing. I’m OK without it.” Of course with my Mom, if I wasn’t in the room to remind her, she’d choose to believe she was OK too, until she fell. Her first fall led to a week in the hospital with a hairline fracture of her hip. Painful, but luckily, not requiring more than rest and rehab. She then spent a month in a skilled nursing facility for the follow-up rehab.
It was during this stay in long term care that we got the first strong hints about changes in her mental status and memory that had not been particularly apparent before. I got several panicky phone calls in the middle of the night with all sorts of seemingly wild claims. I realized that my mother was “Sundowning,” a phenomenon commonly seen in hospitals, where patients who are relatively lucid during the day, become increasingly disoriented as the night progresses. There were not only calls to me, but 911 calls as well. When her rehab was completed and she went back to her apartment, I’m not sure who was more relieved, my mother, the facility, or myself…
Progressive Changes – Onsets of Dementia
After that initial fall, my mother began a slow decline and showing signs of dementia. On about a weekly basis I would get angry phone calls accusing me, or my sister, of not caring about her, followed by tearful, embarrassed apologies, sometimes within minutes, or perhaps the next day. She repeatedly insisted on moving back to her old apartment and resuming the care for her elder sister. When we talked about the situation that triggered the move, it was met with a range of responses from acknowledgement, to enraged denial. Her mood swings were becoming more labile and profound.
After a visit to her doctor, which included a brief mental status exam (MMSE), her daily regimen included both Donepezil and an anti-depressant. Her behavior improved and mood swings were less extreme, but the phone calls and outbursts still continued, just at a reduced frequency. And, her apparent feelings of guilt about having “abandoned” her sister continued, with an increasing level of denial that there had ever been a problem. However, during this period, she had a second fall while hurrying to dress for breakfast, falling backwards into a filing cabinet and fracturing three ribs. The hospital and nursing home stays were repeated, with similar experiences. I did feel a need to intervene when I discovered that the nursing facility was allowing outside lab personnel to come in at 3 a.m. to perform lab draws. This was extremely disorienting and frightening for my mother, and I had to insist that her labs be drawn after she’d awakened for the day.
While there was a grumbling acceptance by the long term care facility management, I felt it was a necessary step for my mother’s well-being. Furthermore, I’m sure the night staff and the local police where happier as their nights were not interrupted by unnecessary disruptions and phone calls. During this time my mother decided that in addition to being her designated power of attorney for her health care, that I should also be designated her financial power of attorney as well. This was a fortunate choice. For the first 4+ years, my mother had been successfully managing her own funds. While I had joint access to her account, I had no authority over her spending, but not long after my change in status, I found she was writing checks she couldn’t cover, and which she didn’t remember.
Failing Short-term Memory
At this point in time her failing memory was becoming increasingly apparent. With her inability to safely manage her accounts, I stepped-in and removed checkbooks and debit cards from her possession (with her cooperation), and also directed that the bank was not to advance funds to her without my approval. Her having granted me legal authority over her finances was a critical piece in my ability to protect her from herself. Without those documents in place, I could not have limited her access to her accounts. Once again, enraged phone calls, but now accusing me of having taken her account without her consent, and obviously not caring about or loving her. These were terrifically hard calls to receive.
I won’t claim that over the years we haven’t had our “issues,” but there had never been any question about care or love. What was particularly frustrating from my perspective was that my training and experience as a nurse seemed to vaporize in those moments. It didn’t matter that I was in my 60′s and she in her 90′s; once again I was her little boy, and I was deeply challenged to respond and act as an intelligent, trained, health professional. This situation lasted for close to a year. I not only had numerous painful conversations with my mother, I also had encounters with the local police (she called them claiming I’d abandoned her and stolen her money), emergency responders (calls triggered by her anxiety, leading to hyperventilation syndrome and related symptoms), and both calls and visits to the local emergency room.
Current Situation & Long Term Care for Mom
Currently, we have a caregiver who follows checks-in with my mother several times per day, making sure she takes her medications appropriately, attends meals and facility activities, and most importantly, that she’s safely in her room at the end of the day. My mother’s short term memory is non-existent. It’s not uncommon for her to forget in mid-sentence that she initiated a phone call, and instead thank me for contacting her. When she leaves her room for a meal, upon her return to her room she’ll call me to let me know she’s “moved back in” to her old place. Sadly, her long term memory is beginning to show signs of significant deterioration as well. She calls me upwards of a dozen times a day, often asking how to contact her parents, and it’s been clear on more than one occasion that she’s confused me with her late brother, or even my late father, both on the phone and in person.
At this point, the saddest aspect of her deterioration is that she is unable to recognize her grandchildren, and has no recollection that she also has great grandchildren. I’ve supplied our caregiver with an abridged version of her life and family, so that she can reminisce with my mother about experiences she’s had. According to the caregiver, she enjoys hearing these stories, and to either relive, or better, remember.
My wife, sister, and I feel fortunate that my mother is in a safe environment, and one that we could not as safely provide if my mother were to live with us. Our home would be unsafe for her due to bedrooms located up a flight of stairs, access to the stove, and our location in a semi-rural situation where she could easily wander while my wife and I are off to work. In her current living situation her housing and meals are provided, and her caregiver is able to see and assess her situation several times per day, as well as arrange for appointments with her healthcare providers.
Read more from Bob by visiting his blog here.
About the Author
Bob holds a Masters in Nursing, with a focus on Case Management, and with three years experience working as a Nurse Case Manager for a major HMO. Prior to shifting into CM, he worked both the floor (Medical/Surgical/Telemetry) and Intensive Care for several years in a metropolitan hospital. In addition to his practice, he has been both a clinical instructor for Critical Care, as well as an online instructor for Samuel Merritt University – teaching a course on Nursing Informatics. His undergraduate degree from U.C. Davis was in Bacteriology (now Microbiology). You can see his full bio here.