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In the early days of ADSLA, most of my clients were the same age as me – that is, the adult children of senior parents. Now I am in my 60s and most of the clients who seek ADSLA services for their loved ones are in their 40s and 50s. That being said, I have never sensed any sort of bad attitude toward me for this reason. I guess it’s because clients know I have been around the block a few times during the past 20 years. Clients and their older loved ones actually appear relieved when they see I am not a kid.

While not a kid, and often only 5 or 6 years younger than the senior for whom I am providing services, I do strive to stay young by dancing and playing the harp in my free time and by working hard on behalf of my clients. I pride myself on the fact that I was taught the right way to do things in a Catholic continuing care retirement community. I was trained by a taskmaster 10 years younger than me, and I worked under the scrutiny of nuns who wanted to do it their way, which was the same way as when the community opened in 1950. Now, being closer in age to my elder clients, it sometimes puts things into a totally different perspective for me.

The client I have in mind as I share these thoughts is a 72-year-old woman who has been diagnosed with Lewy Body Dementia. As the Mayo Clinic explains, Lewy body dementia is the second most common type of dementia after Alzheimer’s disease. Protein deposits called Lewy bodies develop in nerve cells in the brain. These deposits affect brain regions involved in thinking, memory and movement. Mental abilities in persons with Lewy body dementia gradually get worse over time. The afflicted senior might see things that aren’t there (i.e., have visual hallucinations) or experience symptoms akin to those of Parkinson’s disease: rigid muscles, slow movement, and tremors. Unfortunately, as Lewy Body Dementia progresses, the person with the disease exhibits behaviors that are erratic and can even become violent.

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I have recently completed many phone calls with prospective clients. The first question that most ask me is, ”How much will the different senior living options cost?” When I provide the answer, new and prospective clients are absolutely overwhelmed. That’s why, if you are in the process of looking for senior living for yourself or a loved one, you need to be aware of current costs. I share below a summary of costs according to each level of care:

Independent living – The senior can basically function on his or her own, but may need a little help with meal preparation and housekeeping. Costs can start at $4,000 a month for a one-bedroom apartment. Please note, this is what independent living is supposed to be; the senior should need only a little help with meal preparation and housekeeping. Many communities insist that residents at the independent living level adhere to this description. There are other communities that will allow seniors who need more than minimal help to rent an independent living apartment and move in with a part-time or full-time caregiver. This is a matter of personal preference, or there may be some cost savings involved.

Assisted living – The senior needs some stand-by or hands-on assistance with his or her activities of daily living, meaning bathing, dressing, toileting, transferring, walking and eating. Costs can run anywhere between $5,000 and $6,000 base price for a studio unit. This covers basic room and board and three meals per day. Then there will be an additional incremental charge of $400 to $2,300-plus for increasing levels of standby or hands-on care provided to the resident. What formerly was provided at the intermediate level of nursing home care has been absorbed at the assisted living level. What I am finding is that many assisted living communities take on cases that they are not equipped to handle. That is something to be aware of, and why evaluation by ADSLA is always advised.

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Every year at holiday time, I try to share an uplifting story. This year my story is about a client who is in his late seventies. Over the past 20 years, he has had 3 kidney transplants. He also has suffered urinary tract infections (UTI) that have often landed him in the hospital.

I became the care manager for this gentleman and his wife over a year ago because his wife needed help conducting his Telehealth appointments, arranging transportation, and monitoring his care at the nursing home where he resided. It was clear from the outset that my client longed to leave the nursing facility and go home. His wife objected to that idea because of his complicated medical needs and because home care was tried once before and failed. I worked diligently to see if there was an assisted living community that might accept him, but, alas, none would.

During one of his stays in the hospital for a UTI, my client’s nephrologist conducted some tests and determined that the third kidney he had in his body was “dead.” The nephrologist recommended that it be removed. As the couple’s care manager, I quickly made arrangements to have the surgery done, including all pre-operative tests and other time-sensitive and follow-up arrangements. The surgery to remove the dead kidney went extremely well and my client’s UTIs finally stopped.

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I was pleased to offer insights to author Cathy Cassata and readers of Chicago Caregiving magazine in the Summer/Fall 2024 issue (vol 5; issue 1) regarding post-hospitalization or sub-acute care for an older or disabled loved one. My professional advice includes investigating staff-client ratios at any potential facility, avoiding the mistake of being “taken in” by attractive decor when visual aesthetics may or may not indicate quality of care, and asking key questions to illuminate whether the facility can meet your loved one’s needs. To read more about those questions and tips, read Cathy’s article at https://chicagocaregiving.com/after-hospital-discharge/

 

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I was recently referred to a new client by her financial advisor. The client is only 68 years old. She had suffered a stroke when she was in her late 50s and decided to move to a well-respected Continuing Care Retirement Community when she was still able to perform most activities of daily living. She started out at the independent living level, where she received 3 daily meals and help with housekeeping. Then her health gradually became worse and she moved to assisted living. There she received some hands-on help with her activities of daily living, meaning bathing, dressing, toileting, transferring, and walking. Recently, she suffered another health setback and was asked to move to the skilled area where she would receive complete assistance with all of her activities of daily living.

This relatively young senior’s financial advisor referred the client to ADSLA out of concern that her current community offers only private rooms in its skilled nursing area. The current cost exceeds $500.00 per day and there is no option for a semi-private room. In addition, this community doesn’t accept Medicaid (the federal program which is administered by each state for residents who cannot pay for their long-term care). Although this senior has more than half a million dollars in assets, her financial advisor asked me to investigate other options for her as he wants to make her funds last longer and avoid looking for a Medicaid community when her assets are fully depleted. She has no property or long-term care insurance.

I am going to be frank and say that I am not a fan of the nursing homes in the area where the client is currently living. There are only several good nursing homes in the area, and she is already in one of them. I picked the top four in the area. Two of them are part of Continuing Care Retirement Communities, but their Medicaid beds are reserved for the residents who already live with them. Another community declined the client because of her age and, in their view, her insufficient assets. In addition, none of their beds are certified for Medicaid. We therefore have one option left that is in the vicinity of the client’s current skilled nursing facility. All of the beds are certified for Medicaid, so I am hopeful that she will be offered an opportunity to move there.

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My friends tell me I should write a book. At times when I think I have heard everything and would have no new stories to share, the next phone call from a prospective client proves me wrong. Does my heart ever get broken? The answer is Yes. But the following story has left me the most devastated as any I have experienced in the 18 years I have owned this business.

My clients were a woman in her 90’s and her adult son. She had been an active woman who was suddenly stricken with a disease that caused her to become bedridden. Her son lived several hours away. Her wish was to remain in her independent living apartment with a 24-hour caregiver. It was becoming too much for the son to travel back and forth to supervise her situation, so he hired me to supervise his mother’s caregivers, check the mail, and address any immediate concerns with doctor appointments, food, supplies, and any other issues. Unfortunately, the non-medical home care agency that supplied the caregivers on a 24-hour basis was already in place and would not have been my choice. The agency was the “preferred” agency of the retirement community where my client resided, and my repeated appeals to replace the agency were resisted.

I have never experienced a more horrific nightmare than I did with managing our problems with this agency. The first major correction I made was addressing the fact that the agency was billing my client on a 12-hour shift basis. As a result, she was paying for two 12-hour shifts at a rate of 24 hours x $35 per hour per day = $840 per day. I had the agency convert the caregiver to Live-In status, which achieved a rate reduction to $400.00 per day. The only catch was that the caregiver had to be able to sleep uninterrupted for 8 hours a night.

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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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As the Guardian of a ward with Autism, I have grown to love and respect the nursing home staff members who have taught me so much about his disease and care.

My ward is a 67-year-old adult who was found in an uninhabitable home and unable to care for himself after his brother’s death. Following a hospital stay, my ward was sent to a nursing home that could accommodate his needs for in-house kidney dialysis. He spends most of the day in bed with a blanket over his head. If his routine is disturbed, he bites his hands, yells, punches himself in the face, and hits his hands against the wall. He flails his arms and once broke his own leg.

The nursing home caregivers have taught me to respect his preferences. I speak to him in a very low tone of voice, and as little as possible. Too much sensory stimulation upsets him, and I never remove the blanket from his head. As a result, he recognizes the sound of my footsteps and voice. He knows I am the cookie lady. Once I enter the room, he hears the crinkle of my Chips Ahoy package. The blanket comes off his head and he extends his hand for a treat.

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I have some exciting news, and I couldn’t wait to share it with you 🙂

I’ve been asked to speak at a unique and innovative event called Retire Wiser Chicago. This online summit begins just days from now, Sept 9th, 10th & 11th.

This educational event is hosted by two, very well-respected Chicagoland financial advisors who I know you’ll really appreciate. For many years, John Bever and Jim Uren, have been helping Chicagoland residents just like you make wise decisions as they prepare for and enter into their retirement years. What sets them apart from many other advisors I have met is their passion for financial education that is both well research and practical.

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