Delirium -- A Challenge for Care Managers and Families
The author was surprised to hear a story of circus clowns
Delirium – A Challenge for Care Managers and Families
My mother was happy to see me and excited to tell me about the circus parade that had come by a little earlier. There were clowns and animals and music. She was in a surprisingly good mood for someone who had recently undergone major surgery and was still in the hospital. At 88 years old, she had been packing up for what would have been her 34th annual trip to Hemet, CA, where she and my dad had been snowbirds, gradually transitioning from a camper van, to a larger camper van, and, ultimately, a park model trailer, with an adjoining storage shed and a large added on bedroom, always in their favorite RV Park.
A medical emergency interrupted the travel plans. The schedule had always been to leave Redmond, WA, after my son’s October birthday and return before Mother’s Day, in time to have a big family gathering for the June birthdays. While my mom was doing her packing, I was off for a meeting in Eastern Washington with the state officers of AAUW. I was serving as State President. We had barely started our Executive Committee meeting when my husband called to let me know that my mom was in the hospital and my 93-year-old dad wanted to talk with me about her upcoming surgery.
My dad and brother explained that my mom had a total blockage of her intestines and tests had shown numerous tumors in her abdomen. There was an urgent need for surgery, and she could be scheduled the next day. They wanted to talk with me before giving the OK for the procedure. I was stunned to hear this news, frustrated that I wasn’t there to learn what was happening from the medical staff, but felt I needed to trust the advice they had been given. I agreed that they should proceed with the surgery. The rest of that week-end is a blur in my mind, but somehow I was able to drive home with my two passengers and make plans to see my mom in the hospital.
The story of the circus parade made me smile until I realized how impossible it was that a circus parade had come through the hospital during the night. It quickly became apparent that my mom had been either dreaming or hallucinating. When I got a chance to discuss this issue with the medical staff, they assured me that the anesthesia used in surgery often had that effect and it would wear off in a few days.
With that visit to the hospital I became my mom’s care manager, although, at the time, I had no idea what was ahead. I’d been led to believe that she would recover from the surgery and life would go back to something close to normal after a reasonable period of convalescence.
In many families there comes a time when children are called upon to become care managers for their parents or another older family member. I had already taken on this role in regard to my mother’s sister, who was living in Portland, OR, in a care facility. With my mom’s surgery and new disability, I now also needed to ensure that my dad was ok living by himself, handling his own meals and household tasks.
My mom was discharged from the hospital to a nursing home, where I expected she would be for a long recovery period, but she was discharged in a few days for reasons I did not fully understand. After another stay at the hospital, she moved to an adult family home. During this time, it became very apparent that my mom had lost touch with reality. There were no more circus parades, but she did not understand that she had had surgery or why she was no longer in her home. She was not able to follow instructions for her own care and saw no need to cooperate when asked to participate in physical therapy. The doctors and nurses had said this confusion was a result of the anesthesia during surgery and temporary, but the effects never went away. While her mental processes did improve a little, she never regained normal thinking and reasoning ability. She needed full-time care for the remainder of her life and it was beyond what could be provided by family members.
Nobody that I dealt with in the medical field mentioned delirium to me as a possible explanation for my mom’s decline. When I finally read about it online, as you can do in this article from the Mayo Clinic website, I was relieved to learn that there was an explanation for what had happened, but it was also discouraging to learn that it was likely to be a permanent condition.
From my reading I learned that delirium is more likely if there has already been at least some decline in mental capacity. The medical procedure then has the effect of accelerating the progression of dementia. From what I have read, there is no clear understanding of what causes these effects, although some people believe a lack of oxygen during surgery might be a contributing factor.
Even though I have no medical training, I decided to write this blog post about my personal experiences because a friend’s family is currently having similar challenges with an older family member. My friend could not understand how her mom had had such a sudden decline in cognitive ability, when she understood that Alzheimer’s and other forms of dementia had a much slower progression. When I explained what had happened in our family and the nature of delirium, she suggested I share the information in a blog post.
In today’s pandemic world, we are now hearing reports of delirium as a possible effect of COVID-19. According to a newspaper article written by Doctors Wesley Ely and Daniela Lamas, in July, 2020, if delirium occurs, it is likely to mean a longer recovery period and a higher risk of death for COVID-19 patients.
An article by Jennifer Whitlock, RN, MSN, FN, from January, 2020, provides a good overview of risk factors and diagnosis of delirium. The article suggests that medication may help:
Prescription antipsychotic medication such as haloperidol (Hadol) is often used to treat symptoms of delirium.
In the case of a member of my husband’s family and in my friend’s situation, antipsychotic medication has helped to stabilize a difficult situation, although it can be challenging to identify the best drug and dosage.
In June of 2020, Kaiser Health News published a report which discusses delirium as a possible effect of COVID-19:
Both the disease itself and the use of sedatives can cause hallucinations, delirium and memory problems, said Dr. Jaspal Singh, a pulmonologist and critical care specialist at Atrium Health in Charlotte, North Carolina.
Many sedated patients experience terrifying hallucinations, which may return in recovery as nightmares and post-traumatic stress disorder.
Research shows 70% to 75% of patients on ventilators traditionally develop delirium. Delirious patients often "don't realize they're in the hospital," Singh said. "They don't recognize their family."
Learning about delirium helps us be prepared for challenges we may face in the future. It also reminds us of the need to do advance planning for care needs. Once a person is in the midst of a healthcare crisis it is likely too late to prepare and execute needed documents such as:
a. Advance Healthcare Directive
b. Healthcare Power of Attorney
c. Durable Power of Attorney for Finances
d. Disposition Authorization Form for Cremation or Burial
e. The Vital Statistics Planning Form available from People’s Memorial Association for Washington residents
f. Designated Agent form for funeral arrangements
g. Will and/or Trust Agreement. (best prepared by your attorney)
Note: Ideally, your Healthcare Directive and Powers of Attorney will be prepared for you by an attorney who can ensure your documents are consistent with the laws of your state, including any recent changes, and have provisions consistent with your needs and current situation. You can use the online forms as a guide so you are prepared to work with your attorney. If no attorney is available and you have an urgent need for these documents, do your own online research and pick the forms which seem to best suit your needs. Your medical doctor may be able to recommend and provide Advance Directive and Healthcare Power of Attorney forms.
In my mother’s case, she had done her legal homework several years earlier. Her attorney had prepared her will, as well as her Healthcare Power of Attorney, Financial Power of Attorney and Healthcare Directive. She used forms from People’s Memorial (which serves residents of the State of Washington) for the Disposition Authorization Form and Vital Statistics Planning Form. She did not sign a Designated Agent form because that was not an option at the time. She lived a little more than 7 months following her surgery, receiving quality care in her Adult Family Home. A few months after her discharge from the hospital it became apparent that her condition was terminal. For the last few months of her life she was under the care of hospice nurses. The family was grateful and fortunate that throughout the final months, except in regard to physical therapy, my mom was always pleasant and cooperative. She readily volunteered that she was well cared for and happy. Those comments meant a lot to me. At her death, the advance planning that had been done made it relatively simple and economical to arrange for her funeral, burial and estate settlement.
I have four other blog posts which discuss end-of-life planning and which contain references to other sources of information about these planning documents. Please take a look at the blog posts entitled: COVID19 – Planning for Disability and End of Life, A Valuable Gift for Your Family, Dementia in the Family, and Tips and Traps Regarding Senior Living and Finances.