• La Shawn L. Splane-Wilburn, Founder of Homagi

LONG TERM CARE: WHEN THE CLOCK STRIKES 12 – What happens when the safety net has a tear?


You go into Human Resources fill out new hire paperwork and when it comes to your insurance you pick out your 401K, health insurance, your disability insurance, and your flexible spending account. You have done a “good service” for your future. You put in your twenty or thirty years and you retire. If you’re in the best health of your life you can do so at 55 and you will enjoy the fruits of your labor without incident, but what if…

According to the US Gallop Pole), “Meanwhile, the average age at which non-retired Americans expect to retire has also increased over time, from 60 in 1995 to 66 this year. Furthermore, in 1995, more non-retired Americans expected to retire younger -- 15% expected to retire before age 55, compared with 4% in 2014. The age at which Americans expect to retire has been consistently higher than the average age at which they actually retire since Gallup began tracking both. This likely reflects changes in Social Security eligibility as well as the more challenging economic circumstances working Americans currently face. Today's workers are also less likely to have an employer-sponsored pension, and they may still be recovering financially from the Great Recession… The majority of all age groups expect to retire at age 65 or older. This includes 62% of 18- to 29-year-olds, 62% of 30- to 49-year-olds, and 58% of 50- to 64-year-olds. At the same time, an optimistic 15% of the youngest age group expects to retire before age 60. Adults closer to that age are naturally less likely to think they will be ready for retirement by that point.”

So many factors are considered before retiring including the stock market and how much of an impact it has on your savings right? So all of that you took care of and you become very ill. Your family is covered right? Everything is in place…safety net ENGAGE!

I too thought that was the timeline. My grandmother who was in the early stages of Dementia had a stroke while my uncle was at the grocery store( She didn't like leaving the house for fear of slipping and falling, and he'd gone just up the street as he'd done many times before) and she was home alone. She was found by he and my mother unconscious. The Paramedics took her to a hospital nearby that was not her insurance hospital. Once she was stabilized she was moved to her hospital where her insurance covers her treatment. Once she arrived my mother complained that she was not happy with the care of my grandmother and that she wasn’t being bathed and body odor was a concern. I urged her to check for pressure ulcers. She returned to the hospital and inquired to find out she had a stage 3 pressure ulcer. Once my mother confirmed the pressure ulcer I asked her to inquire as to if there had been testing for Sepsis. She received the run around, “…you will have to speak with the doctor…the other nurse who would know isn’t here right now, nurse so and so is coming to talk to you about it…” After getting reports of the “shuck & jive” I called the hospital myself and spoke with the charge nurse and inquired about the pressure ulcer.

The picture I had appeared to be a stage 4 and for there to be a noticeable smell in the room infection was of the utmost concern. I was transferred around and around, promised call backs, and lastly told to call back 3 times “in 15 minutes, the nurse is still with other patients”. I reported this foolery to the Hospital Administrator for that department. Then came the bureaucratic tango. All of a sudden it was time for her to go to a “long term care facility” This past week my mother who was the primary Family Caregiver for my grandmother was told after the 72-hour hold on my grandmothers hospital stay by Medicare that she had until 12:00 PM PST to have my grandmother moved to a long term care facility. I believe it was to get the responsibility off of the hospital of the neglectful care of my grandmother. The week prior my mom was told that the insurance company with a chain of hospitals in Southern California would no longer pay for my grandmother to stay in the hospital as the time had “run out”. After contacting the corporate offices she was advised my grandmother had Medicare as a “secondary” insurance. Medicare the source told her would cover the cost of any facility.

The insurance company/hospital after receiving the notification they would be investigated by Medicare offered to continue to pay for the care but at an offsite facility. The facility is 50 miles from where my mother lives. According to the hospital if she didn’t go to the facility my grandmother would be financially responsible for the cost of her care. She’s in such a fragile state with a ventilator, tracheotomy, feeding tube and recovering from surgery on her brain. This was highly disturbing that a facility would ask that of a family already fighting for the life of their loved one who is suffering and to be faced with the decision of how to pay for her long term care.

My mother is also a MH Family Caregiver for my youngest sister and also cares for my 2 young nephews, so she is unable to travel the distance to visit my grandmother or check on the care she is receiving with ease. My mother requested a facility closer to her but was denied because the insurance company told her they didn’t have any other facilities.

Upon contacting Health Insurance Counselors we were told to report the hospital and file an appeal, all the while we still had to find somewhere for my grandmother to go. At the 12th hour my mother agreed to allow my grandmother to be moved to the facility 50 miles away out of fear of financial responsibility. We are in the process of the appeal and getting her closer to home. One has to wonder the impact moving her constantly has on her physically, mentally and emotionally. She is very ill.

Having this experience and I’m over a thousand miles away and knowing my mother is handling all of this on her lonesome has been very difficult. Being there to do the phone calls and offer support from this end has been a challenge. My grandmother has other siblings who only want to give instructions not be there for the “grunge work”. My uncle who is the other half of the caregiving team for my grandmother and my mom are the only two seeing to her care.

At a time when a family should be seeing to the care of their loved one, they are battling the insurance companies to care for a severely ill loved one. So many Family Caregivers are faced with challenges that are at time insurmountable and must do so while working full time. My mom works full time 6 months out of the year as she is retired. Caregivers are the secondary patients to the illness of their loved one. Many times people forget the amount of love and support Family Caregivers need because they are normally the most resilient ones in the family who will more than likely never ask for assistance, and will continue to work tirelessly and without complaint.

My heart and prayers go out to Family Caregivers who are battling Alzheimer’s and Dementia for their loved ones and all of the unnecessary pressure placed on them by the hospitals and insurance companies. If you or someone you know are in similar situations here are a few resources to help assist:

1. Educate and become fully aware of the type of insurance your loved one has. Which is primary which is secondary? What are the limitations on either? What if Palliative/Long Term care is necessary where would you like to have the care? Does the current insurance cover it? Are there elder abuse incidents at the facility? What do other families there feel about the care of their loved ones at said facility?

2. Take advantage of the Patient Advocate in the hospital for your loved one.

3.Speak with the Hospital Administrator for that department if you have concerns and the medical staffs are unable to accommodate your inquiries, or to report poor treatment.

4. Always check your loved one for pressure ulcers, because they are on the rear of the patient they are hard to see immediately. If you should discover them take pictures and document who you spoke with, the time and date of the discovery. Notify the Hospital Administrator for that department. See The National Pressure Ulcer Advisory Panel.

"Bedsores form in the areas where we have the least padding of muscle and fat, especially right over a bone. Bedsores on the tailbone (coccyx), shoulder blades, hips, heals and elbows are the most common. Total immobility, even for as little as 12 hours, can cause bedsores.” A place for Mom


Image Credit: http://gatlineducation.com/

5. Keep a personal log of treatment and other medical changes in your loved ones health. Fevers, medication changes, doctors names, nurses names and all other medical information.

6. Above all else, be proactive and present as much as possible. Solicit the help of family members to arrange to have close to around the clock presence whenever possible. You loved one deserves the best care and although most facilities provide great care, the presence of family members insures they are attentive to the individual needs of your loved one.

I'm praying for us and all Family Caregivers and loved ones to remain strong during the most trying of times. We are learning as we go and researching as we go. I will share what resources we find and if you like you can share resources in the comments as well. God bless.

#Dementia #FamilyCaregiver #Family #LongTermCare #PalliativeCare #PressureUlcers #BedSores #Insurance #InsuranceTango #MentalHealth #MentalHealthRecovery

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