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This year marks the 60th anniversary of Older Americans Month, as President Biden wrote in his recent presidential proclamation on the occasion. Thirty-three years ago, President George Bush, Sr., observed that Americans age 85 and older constituted one of the fastest growing segments of our population and that 1 in 5 Americans would soon be age 65 or older. Indeed, several years ago, I observed some of my friends retiring. Although they seemed happy to do so, I hoped and prayed that I still had many years of working ahead of me. Deep down, I felt that there was a chapter of my life that had not yet been written. I wasn’t certain what the story and adventure might be, and I thought about it for a number of years.

I have been a harp student ever since my husband’s untimely death from cancer in 2015. I had played the harp as a child and yet, as life-responsibilities grew, I had taken a hiatus for many years. Following the loss of my husband and my parents, I decided to take up the hobby again to divert my thoughts and to avoid escaping my grief by watching TV reruns at night. One day, a dear friend asked me to play the harp for her daughter’s wedding. Then, leaders of a retirement community asked me to play for an event for their residents. As the idea started catching on, the pandemic halted the possibility of playing more places. But, as things improved, I eventually was asked to play at more retirement homes, community events, and dance recitals, etc. Voila! I had found the pen to start writing the next chapter of my career by adding harp performances to ADSLA’s menu of services.

As President Bush wrote in 1990, “millions of older Americans are now remaining in the work force past the traditional “retirement age.” Indeed, many are pursuing second careers, while others continue to enrich our communities and country through volunteer work – and/or by quietly devoting their time to family and friends. Not long ago, U.S. News & World Report noted that many older workers move into a new field before retiring. The national magazine listed 15 “In-Demand Jobs for Seniors,” and I was delighted to see musician listed among them.

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I was contacted by a therapist to provide an assessment of one of his senior clients. When I spoke with the senior’s son, he told me that his mother was receiving terrible care at an assisted living community. He claimed that the care that had been promised had not been delivered and his mother’s apartment was not being kept clean. I set up an appointment to meet the son and his mother in person to evaluate the situation.

The woman met us at the door of her apartment thoroughly unkempt – clad only in a shirt and a diaper that was falling off. I observed a terrible rash down the back of her legs. She told us to sit down while she finished dressing. The apartment was a mess with boxes of sugary snacks and drinks crowding the small counter of the kitchenette. An odor of urine and feces permeated the air. A chair appeared to be nearly obliterated. While we waited, the son informed me that his mother was diabetic and was not attending any communal meals in the facility. Instead, she was ordering unhealthy grocery deliveries to the apartment and eating in the room. She also had serious issues with incontinence.

The senior emerged 25 minutes later. During my conversation with her, I found out that she was a college educated professional and had been involved in the teaching profession. I asked her if she was getting the care she expected in the community, and she admitted to me that she wasn’t going along with the program. She was honest in admitting she had too much pride with having the caregivers help her and was turning them away when they came to shower her and help her toilet. She admitted to me that she could not feel a bowel movement coming, thus the bad condition of the chair. In addition, she said she wasn’t attending communal meals because, in her words, the other residents were “snotty.”

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Guardianship is among the services that I have specialized training and experience to provide. Guardianship is a legal process whereby a court appoints a qualified individual the authority to make decisions on behalf of a person who is deemed to be legally incapacitated. The Guardian’s ward (the person I am appointed to protect) doesn’t have the capability to make decisions about his or her personal care or finances. The Guardian must protect the rights of the ward and allow the ward to function in the least restrictive setting without the danger of harm. The Guardian acts as the ward’s

Advocate

Surrogate Decision-Maker

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I have repeatedly been asked in recent weeks whether a move to a senior living community at this time is “safe.” My answer? No, it is not as safe as we would hope, given the prevalence and the uncertainties of the coronavirus, CoVID10. While reported nursing home deaths related to CoVID19 may be at times inflated or otherwise erroneous, we do know that at least 20,000 and possibly more than 40,000 senior Americans have died in nursing homes during the pandemic, as the sudden onslaught of CoVID19 left many providers and public leaders ill-prepared. Certainly, most senior living facilities are doing their very best to ensure the safety and health of their residents and staff, and are working diligently to follow official public health guidelines for disease prevention. At this time, however, heightened concerns about CoVID safety call for careful evaluation of each and every senior housing option, as some placements must continue out of sheer necessity.

While long-term care facilities are following standard public health guidelines to protect residents as much as possible from CoVID and other ailments, at this time each long-term care community is conducting new admissions a bit differently. Here are some varied examples I have encountered thus far:

1. My client is only 60 years old and has some very serious health issues that render her bedridden. I was hired to find short-term rehabilitation that could also keep her for long-term placement after a stay in a specialty hospital. This objective was a terrible challenge because of her age and her funds being rather limited. Many of the communities rejected her, I suspect because they held the perception that a Medicaid claim would be looming from this client within a short period of time as her limited funds dwindled. The rate of reimbursement for a Medicaid recipient is significantly lower than what a community would receive if a person were paying privately.

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The CoVID19 crisis has brought home crucial lessons for all of us who care about older loved ones and America’s senior citizens. Often, a senior has to be placed in a nursing home because of his or her medical conditions or financial circumstances. By their very nature as communal facilities that house older and infirm individuals, nursing homes are natural “hot spots” for both seasonal influenza and Coronavirus. Residents may contract Coronavirus due to their proximity to other residents who have it, or exposure to a staff member required to give hands-on care, or from some other disease vehicle. In this pandemic both public policy and a lack of emergency planning by nursing homes share blame for the high incidence of infection and death.

For example, some state governors (including, ironically, some who refer to seniors as “our most vulnerable population”) ordered nursing homes to readmit residents who had been in the hospital. In New York, this included seniors still ill with CoVID19! Ordering a resident to be readmitted to a nursing home often sets them up for failure because many homes are poorly staffed to begin with. Most of the time, the ratio of certified nurse assistants to residents is 1:12 or higher. This means that one nurse aide is responsible for caring for a dozen or more residents.

Some nursing homes have sequestered residents with CoVID symptoms to specific areas and required them to quarantine in a private room for seven to 14 days, which is extremely difficult for seniors deprived of human contact. Elsewhere, such sequestration is a safety measure that many homes cannot provide due to bed availability and spacing issues.

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A lively discussion about gun control with friends and siblings brought back a memory about an instance a case where an adult with dementia and other psychiatric issues endangered the life of his spouse of over more than 50 years.

My client hired me because her husband had been hospitalized at one of the local geriatric-psychiatric units. He had a habit of wandering away from the house unbeknownst to his wife, only to be re-directed home by one of their neighbors. He abused his wife verbally and threatened her.

My client’s husband had been a gardener and a gentle man who enjoyed engaging in outdoor activities. This included chopping firewood in the backyard. During one of his tirades at home, he chose to go into the garage, find his wood chopping axe, and threatened to kill his wife with it. Fortunately, his children intervened and at that point he was taken to the psychiatric facility for observation.

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My client is the lovely granddaughter of a woman who was 99 years old when we met. They are of the Jewish faith. The granddaughter had contacted me over concerns that her grandmother was running out of money while living at home and paying for 24-hour caregiver services. The services were primarily for companionship, as she could handle on her own most of her activities of daily living (i.e., bathing, dressing, transferring, toileting, walking, and eating). The woman’s financial advisor had given her several warnings that she needed to move before her funds were depleted. We made arrangements for me to meet my client’s grandmother to do an assessment.

During our meeting, the grandmother insisted that she didn’t want to be in a Jewish retirement community. Apparently, she had been in a Jewish organization for rehab. once before and the stay didn’t end well. Grandma told me her plan was to stay at home until her 100th birthday. Home was located in a far south suburb. The location of her home made it very difficult for her granddaughter to visit, as she lived in the north side of Chicago. She didn’t have a car and had to rent one every time she visited her grandmother. Every time I mentioned a potential move, Grandma would swing the conversation toward one of the many artifacts she had collected during her life’s travels. During our conversation, she also said she wanted to remain out south because she wouldn’t know anyone if she made a move up north. She insisted upon moving to a particular community she had in mind. However, it was not a good idea from a safety standpoint, as the neighborhood was changing – and not for the better.

I went to work and narrowed the options to three assisted living communities that were close to the granddaughter. She toured all three, and narrowed the options to 2 places that she felt could work for her grandmother. I arranged a tour for the grandmother at one of them. Grandma seemed rather stoic and resistant during the tour. After the tour, we went to the famous Superdawg drive-in for hot dogs which we proceeded to consume in my car. While we ate in silence, I decided to ask her, “Well, what did you think of the place?” Grandma look at me and said, “It was a little to goy for me,” which I loosely interpreted to mean that it was too non-Jewish. The granddaughter and I looked at each other since Grandma had previously insisted that a Jewish community wasn’t important to her. She also told us both nicely that she had no intentions of moving until her 100th birthday was over.

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The holidays can be a profoundly stressful time for a Person With Dementia (PWD) and his/her family members. To avoid even more stress and any potentially awkward or embarrassing situations, family members who don’t know about the PWD’s diagnosis should be made aware of it. That way, you will avoid any shock and/or inappropriate remarks when your Uncle Fred decides to pipe up and exclaim, “Hey, why are you acting so weird?!”

Many years ago, I was driving my parents to Wisconsin to visit my maternal grandmother. My dad was sitting in the front seat of the car with me. He used to read the daily newspaper from cover to cover. So, I wasn’t surprised to look over and see him reading the paper during our trip. Dad also had a marvelous sense of humor. So, when I glanced over and saw him reading the newspaper with his sunglasses on, and upside down, I giggled and said, “Very funny, Dad!” But then I saw that he really wasn’t comprehending what I was saying. When we arrived in Wisconsin, I noticed that he needed a lot of help to get out of the car and eventually to the hotel room. I addressed my mother indignantly and asked, “When were you planning on telling me about this?” She replied, “I just didn’t want you to worry.” So, what would have been a better approach? Was it better to cover up the situation and let it rear its ugly head at a time when I didn’t expect it? Or should she have told me?

This season, if you intend on taking your Person With Dementia to a holiday party, plan to keep the visit short. Parties with a lot of people, flashing lights, noise, and kids, etc., can be very overwhelming. It is a good idea to have a family member assigned to stay with the PWD so that he or she stays engaged and does not withdraw. Look for a quiet room where the person can retreat to if he or she becomes overwhelmed. Or you may want to avoid parties all together and have family members visit the person at home in smaller numbers. If you have recently moved your loved one to a long-term care community, it probably is not advisable to take the PWD out of the environment to which he or she is just getting accustomed. All of the communities will have some sort of holiday get-together that family members can attend. Dementia is an unpredictable disease, so it is best to avoid behavioral issues from the get-go.

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The worst part of my business is that I sometimes have to say “Good-bye” to my favorite clients. In the past several weeks, I have had two favorite clients pass away, and one move out of state to be closer to her son. Today, I am going to share a story about one of my clients, whom I am going to call “M.”

“M” was in his early 70’s. He was a former states attorney, who was hired personally by the late Mayor Richard J. Daley. M was extremely eccentric and opinionated, and some of the things he said made me laugh so hard that I cried. He had opinions of politicians no matter which party they belonged to. He had been educated by Jesuits from high school through law school and hated everything that happened in the Catholic Church after Vatican II. He had never married, lived with his recently deceased mother, and cherished an overweight, 6 year old Dachshund that was not housebroken. (Therefore, the dog did its business anywhere in the house). He told me that if anything were to happen to him, the dog was to be taken to a woman who ran an animal shelter in her home up the street. He didn’t put this in writing. His estate was left to a charity. He had named a trust company as his Power of Attorney for Property. I was referred to this gentleman because he had very bad experiences with a non-medical home care agency. After a stroke in spring 2017, he amassed a bill for more than $200,000 in charges for 24-hour care provided by the agency. After reviewing the bill, I found some of the charges to be extremely excessive. I was hired in January of 2018 to help find a new home care agency for him and pay his bills. After bringing in 2 agencies for him to interview, he confided that he had hired some caregivers privately at a much lower rate.

As I put together M’s big financial picture, I found that his money was at a bank in a number of CDs valued over $500,000. He had checking accounts in two banks, an IRA, a pension, and a vacation property in Wisconsin. He had a habit of running down his checking accounts to the last penny, even though he had plenty of money. When I suggested that a financial advisor should be called to “pull everything together and maximize earning potential,” M replied, “No, because they will make me sell the property in Wisconsin.” Please note that M was not in any physical condition to be using a vacation home. Nevertheless, I backed off. However, when I would give him advice, he would acknowledge me with a traditional, “Yeah, I know.” As time went on, M trusted me more and more. Eventually, he asked me to attend his doctor appointments with him and become his advocate. He had signed a Power of Attorney for Health Care with another entity in 2017 that never had any contact with him, or knew anything about him. I was named, however, as Power of Attorney for Property at only one of the banks where his CDs were placed and came due. I would then cash them in. In other words, I was effectively the only person who knew what was going on in his life. Did he have relatives? Yes, but he wanted nothing to do with them!

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My clients were a very pleasant, alert, 90 year old woman and her son. The son had been gainfully employed by a major corporation and had been transferred to a state out west. He liked the new location very much and remained there once he was retired. His mother had lived here in the Chicago area all of her life. When she could no longer take care of herself, the son chose to move her to an assisted living community here. She had lived in the suburbs all of her life and wanted to be in close proximity to the cemetery where her husband was buried. She had an excellent support system here, consisting of many personal friends who visited her and members of her church who came to give her communion at least once a week. In addition, the son hired me to act as her advocate for several hours a week. His long-term plan was eventually to find a senior living community for her out west where he was living. In the interim, he wanted me to monitor the visits from the nurse who was tending to a wound on his mother’s leg, ensure that her hearing aids were charged, make certain she arrived at her ophthalmologist appointments, and see that her mind was being occupied by decent activities and going outside.

At first my elderly client was rather wary of me. But we developed a wonderful relationship. She was very frank with me with regard to the staff at the local community. She was in the assisted living area of a Continuing Care Retirement Community (CCRC), including independent, assisted, and nursing home living, because she needed standby assistance with bathing, dressing, and putting in her hearing aids. On occasion she needed to use a wheel chair for long distances, and was in need of 24-hour supervision. However, she complained of long waits when she pushed her wrist pendant for summoning help. She said that when she did get help, some of the staff members were nice and others were not. She often mentioned to me that the activities were not very interesting. She told me she didn’t complain to staff or to her son because her son tried so hard to do a good job. She did mention that the food was wonderful. Overall, I got the impression that she was just putting up with things and would like to be happier with better staffing and activities.

The son eventually contacted me and said he found a new community for his mom out west and gave me the dates of her departure. I met with the son and his mom to say good-bye. The son told me that his mom was going to be living in an independent living/assisted living/memory care community. He explained to me that the independent living and assisted living residents lived in the same area in the new community because state law prohibited them from being separated. He expressed concern over the potential wait time involved when she pushed her pendant button. I asked him if he had asked what the ratio of staff to residents was and he replied “No.” I asked if he had checked the activity schedule for the types of things that might make his mom happy. I did not receive a clear affirmative answer. Since his mother loved the food at her original, local community, I asked if he had tried the food at the new community out west. Again, the answer was no. When I asked why he went with a community that lacked a nursing home component, he said he was told that any of the services she needed could be brought into her apartment. I’m not certain he was aware of how astronomical the costs of ordering ala carte services into an assisted living apartment can be.

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