When my mother was discovered to have had a silent heart attack at age 88, the news was shocking for her. She had never had heart problems. Because she experienced no common heart attack symptoms, she had a difficult time processing the diagnosis. After a week-long stay in a local hospital just ten minutes from our home where she and dad had been living with us, she needed physical rehabilitation. The hospital staff recommended a nursing home that had excellent rehab specialists, about a 25-minute drive from home.
The first mistake I made was following the suggestion without investigating the facility as a whole–not just the rehab services offered. It was true that the rehab staff were very good. Mother and I spent a lot of time that first day at the nursing home talking with them and developing a plan for her rehabilitation. When I showed up to check on mother the next day, she was not happy. Mother had been a registered nurse all of her adult life and she knew what appropriate nursing care was all about, or should be about. The food was terrible (an understatement) and the staff interaction with mother left her feeling alienated and isolated, though she could call me whenever she needed to.
I immediately went to the nursing home’s kitchen to talk with the dietitian and ask for some ice cream, the only thing from the kitchen mother thought she could stand to eat. The smells emanating from the kitchen and dining areas were nauseating even for someone with a strong stomach. I looked at the meals being served and realized that it was closer to canned dog food than to palatable human food. I went to a nearby supermarket and bought mother some food for immediate consumption, as well as other food (soup that could be microwaved and snacks) to help her get by. This went on for another three days as mother continued to get physical therapy to help her get around on her own again.
About 8 pm on the fourth night she was at the facility, while my wife was visiting her, Mother complained of chest pains and shortness of breath. I was contacted by phone and immediately called the nursing home staff, who had discounted her complaints about what she was feeling. I had to firmly insist that she be taken by ambulance to the hospital’s emergency room. Her diagnosis was something akin to a panic attack and she was transported back to the nursing home after I promised her I would get her out of the facility the next day, which I did.
I have no doubt that had I not responded to her circumstances at the nursing home, she would have become more and more despondent about her captive status, but she knew that neither I nor my wife would leave her in such a facility for long under the circumstances. We had hoped for two weeks of physical therapy, but managed only about five days. No one had suggested home physical therapy. Perhaps Medicare would not have paid for it, and I didn’t know of any nearby stand-alone rehabilitation facilities where she would have received better treatment than she had at the nursing home. What I learned from this experience is that hospital referrals may not be the best way to decide on any kind of medical facility. Some other resources are noted below.
In fairness to nursing home physical rehabilitation, my father later received such services at a different facility after breaking his hip in a fall, but the facility was better managed and the food was not nearly as repulsive as my mother and I experienced. However, that time I was able to research four facilities, including visiting them and asking lots of questions, before Dad left the hospital after surgery to repair his fractured hip. Mother’s discharge had been without much advance notice.
These memories came to mind after I read a new article in the Annals of Long-Term Care about a 2.2% higher rate of nursing home suicides than in the general elderly population; that is, among those living in or moving to long-term care settings, or among their caregivers. My experience with my mother’s short stay in a nursing home helped me understand how living in a such a poorly-run facility could lead to a decision to end one’s own life. However, the data are scant to suggest a causal relationship between nursing home residence and an increase in suicides; and, of course, patients in nursing homes generally have worse overall health than the elderly population as a whole. No one requires data-gathering about such deaths, which is further explained in an article from Kaiser Health News.
Like many people in their 70s, I have visited many nursing facilities to see friends or relatives, some of whom were there for short stays and others until their deaths. I have enough experience with such facilities to know that some are better than others. But I also know that the ability of a nursing home resident to complain (sometimes loudly), as my 103-year old aunt was able to do, can make a difference. She was fortunate, however, because she also had a daughter who visited every day and she was mentally alert and competent. I know that, because of the wide-ranging conversations we had and because she and Dad beat me and my cousin playing the domino game “42.” Staff at the nursing home acknowledged half-jokingly that my Aunt Edra ran the place, raising hell (when needed) as she made rounds each day in her wheel chair. Unfortunately, few nursing home residents are in such good mental or physical shape, or disposition.
The cost of nursing homes must certainly affect the quality of care, and rating nursing homes is inexact. Still, there are some resources available: Consumer Reports; US News and World Report; Centers for Medicare and Medicaid Services; and there are state reviews referenced in some of these publications that may be of assistance.
When it comes to cost, Senior Living reports that nursing home costs vary widely from state to state: The average monthly cost of a private room in Alabama is $6,464; in California, it is $9,703; in Florida, $8,882; in Colorado, $8,547; in Massachusetts, $12,471; in New York, $11,701; in Oregon, $9,262; in Hawaii, $13,216; in Arizona, $7,604; in Texas, $6,053; in Minnesota $8,988; in Illinois $6,524. Assisted living, often provided in the same or associated facility as nursing care, is about half the cost of a nursing care facility. A thorough discussion of assisted living options, issues, and suggestions can be found in Consumer Reports.
An option to long-term care in a nursing home is in-home care, which doesn’t, however, cover 24-hour a day attention. Thanks to the advocacy of disability rights activists, more in-home nursing services are available at about the same cost as assisted living on average, though the low pay afforded by Medicaid makes it difficult for many people receiving in-home services to keep home health aides for long. The Bureau of Labor Statistics reports that home health aides earn an average hourly wage of $11.46 (lower than the hourly average of $12.39 for a nursing home aide worker). With the AARP Foundation reporting that 1 in 7 seniors live in poverty in America today, enhancing the ability of Medicaid to provide better resources for both in-home and nursing care should be an important goal.
All of these circumstances lead some mentally competent people to decide at some point when their decline in health requires assistance with the tasks of everyday living that staying alive is not worth the costs–financially, physically, and emotionally–to both them and their families. None of us can know if we will ever get to that point. If I do and I am mentally competent, I can decide for myself whether living in my condition at that time is worth continuing. But that will be my choice. If I am not mentally competent, my earlier writing and advance directives make clear that I see no reason to continue to live because the values I hold for a life worth living require mental capacity.
These are my informed choices for my life. Everyone must decide these issues for themselves, free from coercion and persuasion by others. Such decision-making will come closer to assuring that we all have a good death than will ignoring such matters.
As is unfortunately usual, there is no mention of the fact that a large number of facilities, even some of the higher priced ones, are rampant with toxic mold. Since 24% of the population has the genetics to have an extreme inflammatory response to toxic mold, putting someone with those genetics into a facility that has high levels of toxic mold (usually hidden, from leaks in roofs, windows, pipes, and many toxic molds have no odor) is a death sentence. There is also an almost complete lack of understanding of the negative effect of chemicals in commonly used cleaning products; everything from laundry detergent to floor cleaning products, air fresheners, cosmetics, perfume. Then add in the number of people who have a dementia reaction to gluten or mercury, and it turns out one is much better off ending one’s life before having to confront living in a prison filled with lethal poisons. As a musician, I have often played “charity gigs” in nursing homes and have been repulsed as well as made sick myself by just the environments. We have a LONG way to go in providing care for our loved elderly ones.
Having experienced a sister who has been in rehab several times following hospitalizations, this blog resonated strongly with me. My sister’s rehab facilities were better than the one described, but poor communication between the various nurses and aides and families is a very real problem in many rehab facilites and skilled nursing facilities, in addition to the concerns in the blog. Personally, I would rather end my life before entering one of these places, if I had the opportunity. And having seen these places as experienced by various friends and family members, I have given this a good deal of thought. Unless I was very sure my stay in rehab would be a matter of days, I would find a way to end my life before entering. Too often, when we think we are giving people a better chance of prolonging life, we are actually prolonging their deaths, dragging them out painfully and tediously, inadvertently increasing despair and helplessness. We all need to consider these possibilities while we are in reasonably good health, because when we are physically or cognitively fragile, we have many fewer options. I was happy to read this blog, because I am hoping it will prompt more attention to the problem.