The Nursing Home Dilemma: Should We, or Shouldn't We?

For as far back as I can remember I have heard elderly and not-so-elderly relatives try to elicit promises from family members that a nursing home will not be in their future. Guilt is a powerful tool and there are those who are extraordinarily adept at using it. Promises made under duress by a child in her/his thirties can be hard to keep when the same child is in her/his sixties or seventies, perhaps having experienced any number of health issues during that thirty or forty year gap.

I doubt anyone has ever said with great excitement and cheerful anticipation, “I can’t wait until the day I move into a nursing home!” None of us likes to think of ourselves as incapacitated but the reality is that some of us will find ourselves in just such a situation, needing more care than our families can provide at home.

It’s important to remember that the vast majority of long-term care facilities are not the dens of horror that our imaginations might conjure up. I am from a large family and through the years I’ve had a close association with a number of assisted living and skilled nursing facilities. My experience and observation in those situations has been that the caregivers take tremendous pride in the care of their patients on every level. It is natural to be wary when faced with such a change in our lives but being unnecessarily fearful is a detriment to finding the best solution for everyone involved.

I am reminded of an elderly couple, 78 and 80 years of age, living in their own home. Their three adult children, all with jobs and families, lived nearby. The elderly woman was diagnosed with Alzheimer’s, prompting a family meeting to discuss arrangements for her care. The decision was made that the husband would care for his wife at home, with the daughter who lived nearest volunteering to stay overnight several times each week to allow her father a restful night’s sleep.

As the mother’s health declined, so did the elderly man’s ability to care for his wife. She wasn’t being bathed regularly, she wore dirty clothes and a lack of oral hygiene caused her to lose several teeth. Her weight dropped from 120 to 98 pounds. Enrolling her in an adult day activity program and hiring home care aides helped for awhile until she fell and broke her hip.

The husband, a diabetic himself, stayed by her side during the resulting hospitalization and subsequent stay in rehab. He slept poorly in the bed provided for him in his wife’s room, lost 12 pounds and looked shockingly gaunt to his children. Not long after his wife’s discharge to their home, he fell and broke his wrist while responding to her call for help. The family decided that placement in an assisted living facility was necessary.

She adjusted well to her new living situation, regained the weight she’d lost and her husband, who visited her daily, reported that his health and feeling of wellbeing also improved due to being on a schedule that enabled him to better control his blood sugar.

How can we argue with such success? My mother is 85 and, to her credit, has not asked her children to care for her only at home, no matter the circumstances. I have just one child and asking the same of her would be a tremendous responsibility for her and, in my opinion, unconscionably selfish of me. We certainly should do the very best for our family members for as long as we can, but accept that sometimes that includes turning over the care to those better equipped to deliver it.

This is a complicated and emotional topic. I know that many of you have had to deal with it in some way and would appreciate hearing your stories and opinions.

Are Nurses Adquately Prepared to Communicate Adverse Drug Effects to Patients?

Believe it or not, there is still controversy regarding whether to inform patients of possible adverse drug effects (ADE) when a new (to the patient) drug is prescribed. Why withhold such information from a patient? The anti-information camp, which I suspect is quite small compared to the pro-info supporters, feels that patients are simply too suggestible and telling them what ADEs they might see will only cause the patient to imagine that he/she is experiencing those effects.

One study, where patients were given a brochure that listed possible adverse drug effects, found that not to be true. Upon follow-up, the information did not cause the patient to conjure up an imaginary health problem but, if a health problem had occurred, the patient frequently did feel the drug had caused it. So, rather than a “suggestibility” effect, the study revealed a greater prevalence of an “attribution” effect.

I feel strongly—and this is not earthshakingly original—that there is no such thing as having too much knowledge. That goes for me, the nurse, as well as the patient. If a patient might experience adverse drug effects, he/she needs to be prepared. Simple enough, right? It turns out that imparting such information to the patient is more complicated than I would ever have guessed.

There are professionals who are of the opinion that in order to inform our patients of drug risks, we must first understand the neurobiologic factors involved in how patients might react to hearing such news and their ability to absorb the facts. I’m not saying that my understanding those factors wouldn’t be a good thing (again, too much knowledge, no such thing), but I do think that I can do a bang-up job explaining, reassuring and assessing without having to go through a checklist of neurobiolgic considerations.

Are we over analyzing all of this and making it more difficult than it needs to be? What do you think?

Goodbye to a Nurse of the Highest Caliber

On September 15 I posted to this blog the sad story of my beloved sister-in-law’s recent cancer diagnosis. The worst case survival scenario was five months—the best, a year with good response to treatment. We, her family, have been steeling ourselves for the long haul, dreading that she would have to endure all that comes with such a diagnosis and that we would be witnessing her slow deterioration—painful prospects for all of us.

But, the arduous journey we apprehensively anticipated came to a rapid end on October 5, just short of seven weeks from the date of her diagnosis. Not one of us considers the outcome anything but merciful but we had hoped for several months of stabilization and relative well-being, just to tie up loose ends and say all that each of us needed to say. That was not to be.

The suddenness of her death has been the most difficult for us to wrap our minds around. She packed a suitcase one evening, got up early the next morning, dressed and got into a car with her husband and two sons for the 12-hour drive to a renowned cancer center in another state. The next day began as usual but by evening her condition took a sudden downturn, requiring a trip to the ER, from which she was admitted to the hospital. Several hours later she was transferred to ICU. Early the next day the results of scans showed dramatic metastasis to her brain and she was told that, practically speaking, there was nothing that could be done medically. She asked to return home and that was accomplished via ambulance.

To have seen her leave her house ambulatory and conversing as usual, only to see her four days later in a far different condition was almost surreal. She had one more day of awareness, knowing her entire family was with her, giving us the opportunity to say we love you and goodbye, before passing peacefully the next.

Most nurses are made, not born—but Nancy was born to be a nurse. She may have had a genetic tendency, as her grandmother was also an RN. She was sweet and compassionate from the time she could talk—perhaps even before. She was always concerned about the comfort and well being of others and had the softest heart around. She was also smart and capable, a skilled anesthetist who was highly valued by the surgeons with whom she worked.

Florence Nightingale is known as the Lady with the Lamp, a title bestowed upon her because of her vigilant nighttime rounds, checking on wounded soldiers during the Crimean War. Throughout nursing school tiny images of her lamp were everywhere—printed on ceremony programs, used in the school’s official seal and appearing as small lapel pins to wear on our collars. At capping ceremonies we carried candles to represent Ms. Nightingale’s lamp. In tribute to Nancy, I say that with her death the light of one very special lamp has been extinguished and our profession has lost one of our very best.

Elderly Caregivers are Desperate for Respite

I recently sat in on a meeting of administrators of various care programs and facilities for the elderly, a few family member-caregivers and social workers. I came away disheartened and dismayed about the predicaments in which some families are finding themselves.

The meeting, which was nothing more than a brainstorming session, came about due to a client situation in an adult day program that provides socialization and activities, but no health care. The director of that program has watched as the health of a 96-year-old client’s caregiver, a daughter well into her seventies, has deteriorated markedly over the past two years due to the physical stresses of caring for her mother at home.

The client needs to be in a nursing home but she has no funds. She is a Medicaid recipient and the waiting list for a Medicaid bed in a nursing home in this area is five years. Frustrated by the situation, the director made a few calls to others involved in elder care, looking for a solution to her client’s problem. Her queries had the unexpected result of generating a meeting to identify the problems and steps that could be taken to find the answers so many of them need.

It turns out that provisions for elder care vary greatly from state to state and, in the case of Colorado where I reside, even from county to county to some degree. To cut spending, the Colorado legislature has placed a moratorium on Medicaid nursing home beds. The number of beds, therefore, cannot be increased. The existing number is woefully inadequate and grows increasingly inadequate daily.

Problems are not limited to those who lack the funds to pay privately. The husband of a woman in attendance, who appeared to be in her mid-seventies, suffers with Alzheimer’s. He is a wanderer and needs to be in a secure unit but there is not a space for him anywhere in our large county. She remarked that it had nothing to do with money—they have long-term care insurance—there is simply no place for him. In addition, the fact that he is male is not in his favor. Males are deemed to be potentially aggressive, so facilities maintain a lower ratio of males to females.

I listened as family member-caregivers told their discouraging stories and recognized a sort of resignation in them. They are desperate for skilled care placement but at this point would settle for respite care in order to get a break from their never-ending responsibilities. One tired elderly man was near tears as he said, “If only there was respite care.”

The wife of the Alzheimer’s patient mentioned earlier told of wanting to go on a week-long trip. She called every facility in the area, seeking temporary care for her husband but found only dead ends. The only thing available to her was 24-hour in-home nursing at a cost of $365 per day, which was beyond what she could spend. She was able to go on the trip only because her son and son-in-law came from out-of-state to stay with her husband. I admire the men for making it possible for the woman to get a much deserved break but I also find it interesting that it took two men, probably in their fifties, to do for one week what a woman in her seventies does every day.

I came away from that meeting more than shell-shocked, as I could foresee similar, or worse, situations in my own life. It is a frightening prospect, that’s for sure, and we should all be cognizant of the dire possibilities that await us.

If those of you in states that are handling the elder care conundrum better than Colorado have experiences to share, I would like to hear from you.