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I was recently hired by a family whose loved one was taking an experimental drug for cancer. The cost of the drug was more than $8,000 a month. Because the drug is experimental, it is not covered by private insurance, Medicare, or Medicaid. The drug was being paid for by a grant that required re-application every year.

The senior was at risk for falling, had a catheter, and had been admitted to a rehabilitation community covered by Medicare. However, one of the children informed me that finding a community that would accept the loved one (due to the experimental status of the drug) was a challenge. Their first choice in rehabilitation communities declined to offer the senior a bed since the drug wasn’t covered by Medicare. The administration at the community did not want to incur any liability for absorbing the cost of the drug. The second choice in rehab. communities admitted the senior, but required the children to purchase the drug and bring it to the home for administration to the senior.

When the senior’s Medicare days were exhausted, it was time for me to find a permanent home for him. While a family member told me that it was probable that the grant would be re-issued to cover the drug for another year, I had to bear in mind that at some point the grant may stop paying for the prescription. Thankfully, this senior had enough money to pay for long term care, and the prescription for several years, before applying for Medicaid. However, all the communities that I approached for his placement required that the children would still have to pay for and deliver the prescription. Since the senior had progressed during rehabilitation, I was able to secure placement in a Continuing Care Retirement Community (CCRC) that offered high level, assisted living that was lower in cost than a nursing home, but could address issues with the catheter via their medical in-home care services. The senior eventually would be able to apply for Medicaid and transfer to the CCRC nursing home on the same property. However, should the senior convert to Medicaid status, the experimental drug will not be covered.

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There are many occasions when my clients hire me as a second set of eyes and ears once they have completed the first round of tours at senior living communities. Most of the time my clients are in emergency situations. Sometimes they have selected a community and are prepared to act upon their decision, but they use me as a sounding board for their concerns. Here are two example situations where my clients were unaware of the types of questions they should have been asking:

Real-Life Story 1

My client was looking to place a loved one in a Continuing Care Retirement Community (a community that has independent living, assisted living, and a skilled nursing home all on one campus). In my client’s opinion, the senior was currently at the independent living level. I had not yet met the senior, so therefore I was unable to verify that assessment. However, during our conversation, there were indications of some health concerns that made me suspicious that the senior was more appropriate for assisted living. The client had toured a large number of senior living communities and was leaning toward selecting one in particular. I indicated to my client that if the senior was to enter at the independent living level, that was fine. But, I had knowledge that the assisted living area had a ratio of Certified Nurse Assistants to Residents of 1 to 20. Such a ratio is not acceptable for a community that is delivering a large amount of hands-on care to its residents. I advised my client to question the Admissions Director about the ratio I shared with my client.

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During the past several months, several of my clients considered taking their loved one home rather than placing him/her in a long-term care community. After reviewing the costs of stair lifts ($2,500 to $16,000) and refurbished bathrooms, all of them opted to place the loved one in a community. That is because the loved ones would have required a 24-hour caregiver at a cost of at least $250 per day.

In contrast to these scenarios, my father-in-law had a stroke at age 85. After a stint in a nursing home, first with rehabilitation, then a short period as a nursing home resident, the family decided to renovate their father’s house for Disability access. I am going to share my sister-in-law’s thoughts as she recalls the situation:

As we saw in the months and year-or-more after Dad’s stroke, senior care giving is a continual learning process. My brother and I still sort of laugh (although it’s not really a laugh) about how Donovans put 50K into renovating the house for Disability access, but no one thought of certain details until those details hit us in the face.

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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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After a long and often gray winter, it is wonderful to start seeing green again – whether it is the lively colors of St. Patrick’s Day celebrations, the first signs of daffodils and tulips, or early Easter decorations.   Spring is rightly associated with fresh starts and new beginnings, and so it might well be a good time to discuss senior living options for the older individual or couple in your life.

Many families have seen a senior loved one’s health decline over the course of winter, or watched with concern as “the house seems to be getting away from Mom and Dad’s ability to keep up with it.”  Hence, spring might be the time to suggest a fresh look at senior living options available in your area.

Here are three tips to keep in mind if you are trying to convince a senior to move or are merely attempting to bring up this sometimes-delicate subject:

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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.
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I recently had a conversation with a family whose loved one was diagnosed with terminal cancer. The loved one was taking a drug that caused some very severe reactions including nose bleeds, diarrhea, and skin outbreak. The person’s primary care physician encouraged the family to keep the patient on the drug, as it could add some precious time to her life. In contrast, the physician at the nursing home where she was completing her rehabilitation encouraged the family to place her on hospice, rather than prolong her life. As this raises very emotional and controversial issues, I have asked the experts at Rainbow Hospice to provide an explanation of hospice care, what it is and is not.

Understanding Hospice

Valerie Nikolas
Marketing & Communications Specialist
Rainbow Hospice & Palliative Care

What is hospice?

  • Comfort care
  • Support and encouragement
  • A celebration of life

Hospice is physical, emotional and spiritual support for patients and families living with serious illness. The goal of hospice care is to provide pain and symptom management as well as comfort, but not to offer a cure.

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089I remember when I received a phone call from an 82-year-old client who was crying piteously. She needed to move to a senior living community because the upkeep on her house was just too burdensome. She was terrified that she could not take her 80-pound Labrador with her. In addition, she wanted to continue to send the dog to the same doggy day care organization on a daily basis because the dog loved the socialization with the other dogs.

Although my initial phone calls to area senior living communities were met with some raised eyebrows from several of the Admissions Directors, I was able to find my client a beautiful apartment with a sliding back door and a backyard. She could lead the dog straight out the back door. In addition, it was within the specified distance so the doggy day care bus could still pick up the dog!

Generally, here are the rules regarding pets at senior living communities:

  1. Although a dog weighing under 40 pounds is typically not an issue, you can use some bargaining power for dogs that are bigger. Many independent living communities are not full. Most Admissions Directors will be willing to accept a dog as long as the senior can take care of it and it is well-behaved. Cats are not a problem.
  2. Assisted living communities (non-memory care) are willing to accept a dog or cat as long as some provision is made to take care of the animal. Many places charge an annual fee, up front, to assist with taking care of the pet.
  3. If your loved one needs to move to a nursing home, you need to make other arrangements for a pet. Many nursing homes have a community dog or cat. But, you will have to make arrangements to have your loved one’s dog visit.

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