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I remember fifteen years ago when I started as an Admissions and Marketing Director in the senior living industry, my future boss took me on a complete tour of the community. Or so I thought.

The community included independent living, where most of the seniors were well off mentally and ambulated with, at worst, a cane. The next level of care was assisted living, which at the time was an extension of independent living. But, the residents at that level received “standby” assistance with bathing, dressing, toileting, transferring, eating, and walking. At worst, seniors there ambulated with the help of a walker. No wheel chairs were allowed. Last, there was nursing home level, or the dreaded fifth floor that was reserved for residents who could no longer function at the independent living or assisted living level. Most were in wheel chairs and needed total assistance with their activities of daily living. Or, some suffered memory impairment and were at risk for wandering. The fifth floor was equipped with a security code for the elevator and an alarm for those residents who might attempt to leave unattended.

When my boss conducted the tour, he showed me the independent living and the assisted living areas, both of which were places where the residents appeared to be happy. However, after I began working there, I was sent to complete a task on the fifth floor where the residents needed total assistance with everything. Being new to the industry, I was like many of my clients taking a tour of a nursing home for the first time. I was nervous and terrified! I rushed down to my boss’s office and told him that I was exceedingly upset that I was not told that the fifth floor existed. As time went on, I grew to love the residents on the fifth floor. There we were encouraged to take a break from the regular tasks of the day, attend scheduled activities, or just talk.

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Many of us, including our loved ones, have terrifying memories of visiting Grandma or Grandpa at a nursing home. We have visions of the residents sitting slumped over in wheel chairs, the dismal aesthetics, unpleasant odors, terrible food, a dying roommate and the ever popular bingo game as the daily activity. These sorts of thoughts, whether exaggerated or fully accurate, will deter a loved one from considering a move to a retirement community.

Yesterday’s nursing homes focused on taking care of the sick. In contrast, the CCRCs of today not only seek to offer lovely aesthetics but also seek to maintain a senior’s independence by offering many a la carte services that allow the senior to stay in his/her independent living apartment. For instance, a senior may be independent for all practical purposes, but might feel more psychologically secure if someone stood by while he or she is taking a shower. These types of a la carte services can help delay a premature move to a higher level of care and allow a senior to remain in his/her own apartment for as long as possible. However, if a senior needs more care in the future, a true CCRC will offer assisted living and skilled nursing to address future health care needs without moving. Thus the senior and his or her family will avoid the trauma of a second move and the loss of friendships the senior has cultivated.

From the financial aspect, many CCRCs have shunned the typical rental arrangement and converted to Life Care Contracts, meaning that if a resident is at some point unable to meet the financial obligations of paying his/her monthly fee, the senior’s care will be subsidized by the rest of the residents. In other words, care is guaranteed “for life.” Here is a brief, oversimplified, explanation as to how it works:

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My client whom I will call “Marie” for the purposes of this story, was a 71 year old woman who had serious respiratory issues. Until recently, Marie lived at home with her mother. They had spent their entire lives together. A sudden illness caused Marie’s mother to be hospitalized and subsequently sent to a nursing home for rehabilitation. When it became apparent that my client’s mother was not going to recover, Marie brought her home and arranged for hospice services. There, my client Marie, a 70-something senior, continued to help tend to her mom, who eventually passed away.

As I had been hired by Marie previously, I was recently contacted by her trust officer, and was informed that Marie had been ill. It was requested that I act as her geriatric care manager. I went to the hospital in order to assess her situation. At that point in time, the trust officer knew very little about Marie’s physical condition.

When I arrived at the hospital, I was very surprised at how much Marie had deteriorated. She had been a feisty, quick witted woman. Despite her breathing issues, she had always been a fighter as evidenced by her devotion to her mother. At first, Marie didn’t recognize me because she was taking medications. Then in a matter of a few minutes, she confessed to me that the combination of taking care of her mother and the breathing issues landed her in the hospital, then in a rehab. community for respiratory therapy, then back in the hospital again. She said, “Andrea, I am convinced that taking care of my mother worsened my health. But, I loved her, and I would never change what I did. But, now that she is gone, I really have nothing to live for.” The hospital’s plan was to send Marie home with hospice care. She told me she was impressed with the hospice team that had taken care of her mom, and wanted the same people to take care of her.

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I remember fifteen years ago when I started as an Admissions and Marketing Director in the senior living industry, my future boss took me on a complete tour of the community. Or so I thought.

The community included independent living, where most of the seniors were well off mentally and ambulated with, at worst, a cane. The next level of care was assisted living, which at the time was an extension of independent living. But, the residents at that level received “standby” assistance with bathing, dressing, toileting, transferring, eating, and walking. At worst, seniors there ambulated with the help of a walker. No wheel chairs were allowed. Last, there was nursing home level, or the dreaded fifth floor that was reserved for residents who could no longer function at the independent living or assisted living level. Most were in wheel chairs and needed total assistance with their activities of daily living. Or, some suffered memory impairment and were at risk for wandering. The fifth floor was equipped with a security code for the elevator and an alarm for those residents who might attempt to leave unattended.

When my boss conducted the tour, he showed me the independent living and the assisted living areas, both of which were places where the residents appeared to be happy. However, after I began working there, I was sent to complete a task on the fifth floor where the residents needed total assistance with everything. Being new to the industry, I was like many of my clients taking a tour of a nursing home for the first time. I was nervous and terrified! I rushed down to my boss’s office and told him that I was exceedingly upset that I was not told that the fifth floor existed. As time went on, I grew to love the residents on the fifth floor. There we were encouraged to take a break from the regular tasks of the day, attend scheduled activities, or just talk.

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If you are considering non-medical home care for your loved one, you should be aware of some changes in this segment of the senior living industry.

When I started in the senior living industry over 15 years ago, things were very simple. “Assisted living” meant nothing more than “stand by,” assistance with activities of daily living. Now, the industry has changed. “Hands on” care is available at the assisted living level, which allows the senior to remain in his/her assisted living apartment so much longer. In the same way, the licensed, non-medical home care agencies have undergone many changes. I have asked Mike O’Brien, owner of Independence-4-Seniors, and Legislative Chairperson, Illinois Chapter of the Home Care Association of America to tell you about them.

Illinois Legislation and Regulatory Changes in Private Duty Homecare

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Assisted living communities that have a memory care unit are supposed to be adequately staffed with assistants and aides who are educated to deal with the behaviors of dementia residents. The habits of these residents can often be repetitive and endanger the resident if they are not closely watched. Many residents “sundown” in the evening, meaning they may often become more confused and agitated at this time. In my opinion, the caregiver ratio in these sorts of units at night should be no less than 1 aide to 8 residents, when residents with dementia, whether ambulatory or not, can become very agitated and even combative. The “powers that be” at some senior living communities will dispute my ratio, contending that they only need to staff according to long-term care regulations. This month’s real life story will outline the consequences of understaffing.

Real-Life Story

I was recently hired by a client who was forced to place her memory-impaired relative in an assisted living community’s memory unit. The relative had been living in another retirement community that was not equipped to care for residents with memory issues. When the staff at the original community witnessed the relative dragging a bag of laundry up the hallway in the wee hours of the morning, the staff arranged to have her taken to the local hospital’s behavioral unit for evaluation. Apparently, this had not been the first incident of questionable behavior. When the evaluation of the relative was complete, my client was informed that the retirement community could not handle the relative’s behaviors. Therefore, my client had to place the relative in an assisted living community that had a bed available in its specialized memory unit.

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I worked with the adult child of an elderly couple who lived out of state. Their ages were in the late 80’s and mid-90’s. nineties. One parent had recovered from lung cancer surgery and was operating at 85% of normal capacity. The other parent had a diagnosis of Lou Gehrig’s disease (ALS) and was expected to decline rapidly in the upcoming over the next 6 months. Upon meeting the parents, I was delighted to find two happy seniors who were functioning (at this point) at the independent living level. However, the parent with Lou Gehrig’s disease needed to use a feeding tube at mealtimes (and mealtimes only). The parent was taking care of the feeding tube with no assistance. Otherwise, the parent walked freely without it.

At the request of the couple’s child, I completed a comparison of every Continuing Care Retirement Community (CCRC) near the northwest side of Chicago, and the western suburbs of Chicago, with my client’s the child’s wish being that mom and dad they would be admitted to independent living. The problem I ran into was since independent living is unlicensed, the only help the couple could obtain in an emergency would be to call to 911. They were not in need of any of the services provided in assisted living. Since maintenance of a feeding tube is a skilled service, it could not be taken care of in an area that was licensed for assisted living. Last, none of the skilled nursing homes within the CCRCs could provide a ventilator, which was a service the parent may need down the road.

So, what did I do? I knew the child of the seniors owned a condominium right in the midst of downtown Chicago where mom and dad they could attend the plays they so deeply loved, as well as enjoy a lovely view of the Chicago skyline. I suggested that the child hire me as the parents’ Geriatric Care Manager and move them to the condo downtown. I would arrange for a housekeeper, licensed non-medical home care agency and eventually a medical home care agency (nurse) to take care of their needs as their health declined. Since the funds were available, in this case, staying “home” made sense.

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Every once in a while I am confronted with a situation that requires me to think out of the box a little bit more than usual. Recently, I was asked to find placement for a “young” senior who had a traumatic brain injury. This case involved many calls to different social service agencies. Unfortunately, due to my client’s age, lack of need for hands-on care at this point in time, and certain cost factors involved, some of the information I obtained was not usable. I had to dig deeply beyond the options that first emerged.

Real-Life Story

My client is 63 years old. Unfortunately, my client was hit by a motorcycle when a teenager and suffered a traumatic brain injury. After rigorous rehabilitation, the client was able to lead a normal life. However, after a series of personal disasters including a fall, the client experienced a number of physical setbacks that resulted in needing to use a walker for ambulation and needing to move in with an elderly parent. The parent and the child shared a caregiver from a private, non-medical home care agency for standby assistance with activities of daily living. At this point, my client needed only standby assistance with dressing. The arrangement was only temporary for my client, as independence and socialization were major factors. My client was doing well from a cognitive stand point. Therefore, I was hired by the client’s Power of Attorney for Health Care to find alternate living arrangements for the client. Here are the results of my research:

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Approximately 40 million Americans today are caring for an elderly loved one. Are you one of them? The demands of caring for an elderly loved one along with your own family can be physically and psychologically challenging. If you are employed, the additional responsibility of becoming a family caregiver might not be feasible for your schedule. In addition, the role reversal experienced between the “adult-child caregiver” and the elderly parent can lead to resentment and stress. If you must relinquish caregiving responsibility, the question ultimately becomes, “Should I place my loved one in a long-term care community or hire someone to help care for him/her at home?

This question is continually asked of me and often causes controversy among the families that I serve. My goal is to find the best answer and every situation is different. In the nine years that I have offered my senior living services, no two cases have ever been exactly alike. However, when a senior is still capable of making his/her own decisions, s/he almost always wants to remain in the home as long as possible. The only exemptions to the rule are if a senior is lonely and wants the social benefits of being in a community or medical issues no longer allow the senior to remain in the home, or s/he can no longer afford the luxury of in home care. Placement in a community is often the second choice to remaining in the home and normally arises when the senior is exhausting his/her funds. However, caution needs to be taken with this strategy as many nursing homes require a year or even two years of private pay before a person is admitted. This insures against the immediate filing of a Medicaid application, which can entail months for a long-term care community to receive reimbursement (from the state) for a resident’s care.

If you have a senior loved one who may need some help with the activities of daily living in the future, ballpark figures (based upon national averages) for non-medical home care and long-term care community costs are listed below to assist in making your decision:

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Any situation involving a senior and the analysis of the best senior living option for him/her is going to be fraught with emotion. That is why you need to take extreme caution that your sources of senior living information is reliable. Occasionally, I’ll hear a client object to a certain long-term care community that I present among options. The client will say something like, “Oh, my cousin had a terrible experience there 30 years ago!” Please bear in mind that organizations and their philosophies change over time, as do their staffs, and most importantly the Administrator. Or, someone may tell me, “My friend had a big problem at that place!” Please be certain you get the specifics of what the big problem was. Many times, relatives of the senior may be to blame, as they might not comply with the requests of the long-term care community, or their expectations are too high. For example, I once had clients tell me they expected the Certified Nursing Assistants (CNAs) at their father’s nursing home to sit down and play a hand of cards with him. This is not a reasonable request when many nursing homes are understaffed.
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Real-Life Story
My clients were two siblings of a relative who had a terminal illness. Both siblings lived out of state. The relative had hit a plateau with physical therapy and was due to be released from the hospital in several days. The siblings both lived out of town and were grappling with whether to send the sibling home with non-medical home care and hospice care or to admit her to a long-term care community, with hospice care. While we were in the midst of the consultation, I learned that their friend, a retired medical professional, would be joining us.