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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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No one ever likes the idea of placing their loved one in a senior living community. But sometimes an observation from a non-family member and unbiased third party like ADSLA can bring another perspective into light.

My client was a child of elderly parents in their very late 80s and mid-90s, respectively. One parent had issues with dementia and needed serious help with toileting and bathing, including lifting. The more independent spouse, who had health issues too, insisted upon completing these tasks for reasons that I have heard many times before: e.g., “We don’t want in-home care because we do not want anyone in our house.” Or “I don’t want my spouse placed in a senior living community when I can do this.” And “Money is an issue.” While sympathetic to such common reasons and the spirit of love and commitment behind them, I observed that the caregiving spouse was very small in stature and looked tired and frail. I had no idea how they were completing the caregiving tasks without getting hurt. Needless to say, something needed to be done for both parents’ well-being.

My client had arranged for me to meet the couple via a Zoom call. When I observed the senior with dementia, I found that by engaging them in conversation that they loved to talk about their hobbies and seemed to be thrilled to have someone to talk to. The senior was very talkative and social. In contrast, the person doing the caregiving looked very fatigued and frail. In addition, I learned there was another adult child living with the couple who supposedly sat with the person with dementia (PWD) but wasn’t engaging in any of the caregiving. When I suggested that it might be a good idea to hire a caregiver who could engage in conversations with the PWD about their beloved hobbies, I received pushback from the resident child who said, “I can do that.” I also pointed out that a hired caregiver could provide an opportunity for the caregiving spouse to take time for respite and freely do whatever they wanted to do for several hours each day. Again, the caregiving spouse objected, claiming “I really don’t need that.”

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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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If you are thinking of hiring licensed non-medical home care for your loved one, you should be aware of some changes that have arisen due to the pandemic. My Real-life Story will outline what they are.

Real-life Story

My client is an 84 year-old man. He is still an avid skier, and flies a glider plane. His wife who is only 72 years old is well in the latter stages of Alzheimer’s disease. Although she is ambulatory, she cannot bathe or dress herself. Previously, she had prepared all of the couple’s meals. Since my client doesn’t cook, meal time was a huge challenge. He told me that getting his wife dressed and fed in the morning and putting her in bed at night were the hardest parts of the day for him. Yet, he admitted that he wasn’t ready to place her in a nursing home. But, he also told me that her condition prevented him from getting out to ski or fly his plane. It was taking a toll on him and he was increasingly conflicted and in need of both a listening ear and informed, professional advice.

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