On May 2018 KosAbility Meeting, I published, " Moving a Family Member into a Nursing Home." I wished for a 'Happy Ending' to that story, but that is not the case. This current writing starts out a little disjointed, but please bear with me. This week, I want to share something that is going on right now. Although I am hopeful, I have no idea how this turns out.
Community
Although I went from being an agnostic to an atheist, my upbringing is in the Christian faith, specifically Lutheran, but with a mix of Baptist thrown in. My teenage experiences in a 12-step drug rehab also color my experiences with a higher power and worldview. My beliefs were further shaped by my experiences of stroke and the subsequent education I received in college for a new vocation. Each person is entitled to their own belief and I respect and honor these differences. I have come to realize my own belief system is still changing as I gain new understanding of the forces that shape our lives.
Family, community, friends, neighbors, groups, coworkers and others.... we are all connected, even dependent on one another all throughout our lives. We were once young, and as we mature to take on new responsibilities, we sometimes raise children, we pay our way, we give back to the community by helping others, sometimes family or friends, sometimes strangers on the street. We support schools, our community with our funds and our time. I like to be employed, because when I am employed, I pay income taxes and I feel like I'm continuing my part in pulling the weight. In Texas, we pay property, sales taxes and user fees to support our community. In times of wars, some of the community serve our nation. Chester Latham served in Korea. His wife, Nell, raised a family and then, adopted and raised two grandchildren in Garland. They participated in their church. Charlie, my wife, was one of those children raised by Chester and Nell. As Nell aged, it became our turn to give back. Over the ensuing years, we did the best we could.
Stressful Times
As I write this rough-draft portion of this essay, I am just two days from my 60th birthday. My wife and I have taken this week off work in our first vacation in five years. Our first order of business was making our scheduled doctor's appointments and the cleaning our house for the expected gathering of our family for the holidays.
What should be a joyous time in our lives with the retirement just around the corner for my wife and I..... is not. In fact, this is the most stressful times in our lives. I wrote an essay of Charlie's mother, "Moving a Family Member into a Nursing Home Facility." That was a stressful time and I thought she would be well cared as Nell lived out her days. I was so wrong, as the nursing home first drained Nell's resources, then filed bankruptcy, and soon after came an eviction notice when the nursing home failed to get Nell transferred to Medicaid with billing that exceeds $80,000. This is a train wreck, an ongoing, slow moving, situation. Following the essay is the update of where we are right now. What is the final outcome? I do not know. I can hope and plan, but there is no more I can do today.
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Moving a Family Member into a Nursing Home Facility — originally published May 27, 2018
These are two quotes I keep in mind as I'm writing about my (and my family’s) journey:
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
--AA Prayer
and:
Do what you can, with what you have, where you are.
--Theodore Roosevelt
Moving a Family Member into a Nursing Home Facility is a process that affects the whole family; mine, my wife’s, and the interrelationships within the mixed families. My wife's name is Charlie and her mother, Nell, was recently moved into a nursing facility. Her family is not particularity close; there are deep divisions that will never completely heal. There are some within my family as well. I think this is true with most families, though the degrees of dysfunction may differ.
Charlie has a lot of experience as a caregiver; she has cared for various members of our family at different times. At this moment, she has financial and medical power of attorney for Nell. Nell lived in her house, conveniently, a few blocks from our house. Nell's medical history includes diabetes, stroke (about 12 years ago), and a hip replacement. Due to the stroke and her hip replacement, Nell relies on an electric wheelchair for mobility and she was, until recently, able to transfer to the bed or a chair with little assistance. Charlie’s sister lived in the house as well. Charlie's sister is a traumatic brain injury (TBI) survivor and SSDI recipient but cannot drive because of vision loss from the injury.
Nell's adopted grandchildren do what they can in support for Nell, although they are live in another part of the state now. So, basically, it's up to Charlie and Charlie's sister to care for Nell.
Nell lost a lot of independence with her stroke about 12 years ago. After rehab, she required a family member to lend assistance about once a day. A year after the stroke, Nell fell and broke her hip. She never regained the ability to walk, but after a second trip to rehab, she required little assistance as she could transfer between the bed and the wheelchair and maintain hygiene with a wheelchair accessible, handicap accessible bathroom. Nell needed help with the housework, meal preparation, her medication set up, and daily diabetes maintenance. For years she was still able to do some things- like baby sit her grandchildren, helping watch over them after school and during summer breaks. These last few of years Nell slowly became more dependent on the family. Nell's forgetfulness (that was originally thought to be aging) slowly turned into dementia.
I helped with house maintenance as needed: plumbing, electrical, heating, sheetrock, painting, and air conditioning issues. Other family members would pitch in with the yard work but, the house was originally built in the 50's. The last remodel was about 40 years ago and needs major renovation.
Mary Beth, Nell’s adopted daughter (biological granddaughter) moved in with Nell this past year while Charlie's sister went to go live with her daughter. This was the best course of action at the time as Marybeth was more capable of safely lifting Nell than Charlie’s sister.
Mary Beth was taking college-level on-line courses but needed to work outside of the home for income which left Nell alone for 2 to 3 hours per day. Marybeth was also soon going to be applying for a full-time job, which would leave Nell alone for most of the day. Charlie and I discussed moving Nell into our house. I would give-up trying to find a part-time job and take care of Nell. We have a new handicapped and wheelchair accessible bathroom already and could easily add a ramp access to the front door. The deciding factor was Nell could no longer be counted on to help with her daily hygiene. She was no longer able to help with getting herself to and from her wheel chair and to/from the bathroom. The daily caretaker had to be able to physically lift Nell for transfers and I am unable. What would have been nice was to have had the resources to hire a sitter or put Nell in an adult day care setting. This left a nursing home as the only choice; one that accepted Medicare (for a short time) and Medicaid in lieu of payment. At the time the only thing going in the family's favor was that Nell owned her house outright, the sale of which helped cover the transition costs.
The problem with care giving for the elderly seems to be in the transition of care and gauging the right moment of increasing care. Too soon, and you are interfering with the person's independence; too late, and you risk the person's health and safety.
Mary Beth took the lead on locating and visiting nursing homes in the area. She found one about 10 miles away from our house that would accept Medicare for the rehab, then Medicaid for the ongoing care that Nell needs. The family moved Nell in that same week. The family felt good that Nell was in a good, safe, nursing home. The nursing facility could care for Nell better than her family could at this point. We all felt guilty though, as if we had let Nell down.
Selling Nell’s house created its own set of problems. Although Nell was listed as the one to paying the property taxes, her husband, Chester had no will when he passed. This caused problems with the deed transfer. It took a few weeks and documents proving birth, marriage, and death of Chester to fill out the questionnaire from the title company to sell the house. The questionnaire was needed as preparation of the affidavits before Nell's house could be sold.
I began moving Nell's no longer needed small items into large contractor's garbage bags to trash or boxes in case the neighbors could use. I started in the kitchen, going through the refrigerator, then on to the cabinets where there were dishes, cups, utensils, pots, pans, dishtowels, wall hanging, shelves. Everything had to go. My daughter, my nephew and brother-in-law helped by moving the appliances into my garage for later sale and moving the big furniture out to the curb.
This went on for three weeks, I was working 6 hours per day. When I was running items out to the curb, the neighbors (at my invitation) would carry a great deal of the stuff away sometimes before I could carry out the next load.
As if there wasn't enough stress on us, my poor judgment of character made things worse. I enlisted Michael (Mike), a close friend of 25 years to help sell the house. Mike is a real-estate agent and informed us that the house was in such bad shape that it needed to be demolished and sold as a lot. Mike took advantage of our dire situation by low-balling us on the value of the house and had planned to hide part of the final sale in a trust fund. It was an unethical action and in the unlikely event of his proposed sale going through, it certainly would have exposed Nell and Charlie to a possible Medicaid fraud investigation. My biggest mistake is that I trusted his as a friend; I don't want to think about could have happened had the sale gone through, both the families’ added expense and the relationship between me and Charlie. When I insisted that Mike make a written document describing value of the house and why the house had to be demolished, he balked angrily, and we parted ways.
Charlie was contacted by an old neighbor who suggested an honest real-estate agent. The real-estate agent received over 50 bids for the house in the four days it was listed. The title company was able to get the house through closing and Nell received almost 10 times what my "friend" had offered.
With the sale of the house, Nell was able to pay off her medical debts, future burial needs, and get a new flat screen TV for her room at the nursing home. With the rest of her funds, Nell will be able to pay for her full care at the nursing home until she is below $2,000 in her bank account. At that point she will be eligible, once again, for Medicaid. I expect that transition to occur around December of 2018.
Things are now returning to a new normal for me and Charlie. We, as a family (however dysfunctional), have made it through this very stressful time. Nell is enjoying the nursing home, but misses having her family around. I make time to visit Nell at least once a week. Nell's only complaint about the nursing home is the weak coffee, so I often bring her Starbucks as a treat. Charlie visits Nell on a separate day. Charlie's sister is able to visit Nell twice a month, but she will soon be moving to another part of the state. I wish Nell could receive more visits from the family, but we do what we can.
Theodore Roosevelt's quote keeps on playing in my mind, "Do what you can, with what you have," over and over, again.
Postscript:
I want to thank Nell Latham and Charlie Park for allowing me to share this story. And I want to thank Ashley, my daughter, for the final editing this dairy (Ashley has many talents).
December 2019 Update:
We recently hired a lawyer for Nell whose specializes in Medicaid Applications. We have also moved Nell from the nursing home that botched things up to a new nursing facility about 10 miles from our house that had an open Medicaid bed and was willing to take a chance that Nell would be qualified Medicaid without a family's guarantee of payment. The difference is $7600 per month after Nell's full SS check is applied. We were turned away from many nursing homes. Medicaid will pay 3 months of back billing by the nursing home when she is accepted. Nell is in limbo at the moment with her fixing to head into the third month in December. Come January, I hope not to receive another eviction notice. We are working with the lawyer in gathering the paperwork that Medicaid wants from all the county and state agencies, and Nell's banking records for the past two years.
Meanwhile, Nell had a fall recently. She had a twisted ankle and bad bruising of her lower leg. Nell now requires a lift or hoist and two person to transfer out of bed to the wheelchair. Nell's dementia is getting worse, too. I think she is no longer finds enjoyment of watching TV because she is no longer able to process the shows or follow the storylines. Nell, until very recently, use to find enjoyment in coloring books. She no longer seems interested. Nell can't read because of the stroke. Nell is losing weight. She finds it taxing just to sit in her motorized wheelchair. She still enjoys the freedom of movement, but Nell wants to be in bed after only a hour of eating lunch. I'm afraid these holidays are going to be her last. Nell is losing the sense of time and places. When I went to exchange Nell's laundry, she expressed that Charlie lives in Marshall, TX . I stated that she was not there because of work, but it didn't seem to register.
The continued stress on Charlie and me is..... words fail me.
When I first learned of the eviction notice, my first thought was collect our phones, turn them off and put them in the safe. Don't answer the door or mail.... just go to work and check out of our problems..... But, instead we'll just get though each day. Charlie and I made a new commitment to each other that day we received the legal notice.
In closing, my first priority is getting Nell qualified for Medicaid, which will ensure her safe care. I fully expect for my wife and I to be sued for the overdue payment of the first nursing home, as Charlie was recently made aware that she signed a piece of paper that guarantees payment to the first nursing home. I believe our only recourse then is to file personal bankruptcy.
Well, Shit.
I just want to say thanks for letting me share with you.
And I will keep you updated.