Mom passed away in her sleep on August 24, 2024 at 9:50pm. I wrote this entire article two days later to vent, tell my story and more than likely as a way to grieve her loss. I don't know exactly why I started writing, but once I started, I couldn't stop until the story was told. What you are about to read is a brief introduction to mom. But, most of the story shares what transpired during the month of August 2024; mom's last month with us.
Mom was a strong, tough, self-determined and God-fearing woman who never depended on anyone and worked extremely hard to care for her children (two sons and a daughter). About 10 years ago, she lost 90% of her vision and thus needed help with grocery shopping and any appointments that took her outside of her home. As you might imagine, going blind meant she was now forced to rely on others; the very thing that went contrary to how she lived and saw herself.
Although blind, she was still able to care for herself since she knew her home (she went blind while living in the same condo) and she could use her phone thanks to the miracle of technology. I replaced her flip phone with a smart phone, set up the phone with Google Voice and trained her on how to use it so that she could call anyone she wanted to talk to and/or call me for help if needed. She was 80'ish years old at the time and I was surprised how quickly she learned how to use a smart phone. She was a really smart lady! She needed to say "OK Google" to activate Google Voice. Sometimes the phone wouldn't work, and she would give me that look. I gingerly said, "try again mom".
I would visit her once a week to check on her and the condo. If I was traveling out of town, I asked someone in the family to be on standby for her. My sister was around initially for backup, and she also handled mom's finances, scheduled appointments and we tagged teamed on taking her to them. But, after my sister suddenly passed way in April 2022, I took on the full-time job of mom's care. I knew she was strong and that she wanted to be in her own private home and so I encouraged and enabled that for as long as possible. She was often stubborn and wanted to do things her way, so I probably had very little choice in the matter to be honest. But, in February of 2023, she told me she was tired and didn't want to live alone anymore. And so, a long and extremely difficult journey began both for her and for me.
I could not care for mom in my home, even though I had the space, because I had to work, transport her to appointments and take care of her legal, financial and medical needs. I also had my own personal issues to deal with. Transporting elderly, blind people is not an easy task and so I couldn't take her with me every time I went somewhere. I remember taking her grocery shopping, guiding her through the grocery store while she held on to the cart. But she reached out with her hands trying to feel what was around her. Once she reached out to a stacked display of glass jars. Had I not caught her in time, she would have knocked over the entire display and likely cut herself with a broken jar. So, no more trips to the store with mom. Leaving her alone in my home while I worked or took care of her business was not an option for obvious reasons. Since she no longer knew her surroundings, she required 24-hour care and that's when I started to learn firsthand how broken and expensive our healthcare system is, especially for the elderly.
After living with my brother-in-law and then my brother for a short time (a long story onto itself), neither of whom worked at the time, I was able to secure a room at an Assisted Living Facility (ALF) for her. The facility was good, and the section she was placed in only had about 20 residents. Unfortunately, the facility closed, and I was forced to find another one. The next one was a small ALF located in a 4-bedroom house run by an Administrator who had three other residents with her. I didn't know such facilities existed, but many do. At the same time, I began working with attorneys to secure Medicaid money to pay for the ALF. The attorney was necessary because attempting to file and getting approved for Medicaid can take years. The firm I worked with was very experienced with Medicaid and had a 100% track record with approvals. They charged a flat fee instead of an hourly rate as other firms do. Mom's Social Security only covered half of the $4500+ monthly ALF rent (that's the average in Florida and it doubles for Skilled Nursing facilities). I emptied out and sold mom's condo (another long story) and used the proceeds from that sale to cover the cost. But money was quickly running out and so I retained the law firm.
While I was working on the Medicaid application, The ALF Administrator decided to shut down her business and take her best patients with her from Orlando to Deltona, which included mom if I approved. The Administrator took really good care of mom, and they liked each other. Since my goal was to keep mom happy, comfortable and well cared for, I agreed to the move to Deltona. My one-way drive time to visit mom increased from 5-10 minutes to 45-60 minutes. But the distance didn't matter since I had a good caregiver. The Administrator was now a private caregiver rather than a Medicaid accepting facility. What I didn't realize was that she no longer had an in-house physician or pharmacy and so I had to search for those services on my own. So, off I went into the Deltona area searching for a physician and I found an Orlando Health physician in Lake Mary. The ALF and I agreed to use Publix as the pharmacy. I would have to travel to Deltona to pick mom up and take her to doctor appointments in Lake Mary and to her old dentist in Orlando; a 4-hour day for me in each case.
Then I learned that, for Medicaid to pay, mom had to be located in a facility that accepted Medicaid. So, after a couple of months, the search for yet another ALF started. I was able to find one in Casselberry, much closer to home, that seemed to be as good as the first ALF, but it had many more residents; about 50 if I were to guess... some of whom I would later learn were a bit... interesting. I had no choice but to keep her at the Casselberry facility since options, time, and money were limited.
Unless you're rich, think hard before agreeing to go with a private caregiver. No one had any bad intensions and the Administrator was one of the best caregivers my mother ever had. But, looking back on this experience, the better decision for me and mom would have been to move her to a Medicaid accepting facility that was local (e.g. Orlando) and had inhouse services such as a physician, nurse and pharmacy.
After almost a year and with money almost completely gone, I was able to close out the Medicaid application and get Medicaid to start paying for part of mom's rent this month (August 2024). Medicaid only pays for the medical portion of the rent, not room and board. So, mom still had to pay out which amounted to all of her Social Security and most of her small pension. $250 was left for her to pay for incidentals. Let me tell you, her incidentals, which included medications, cost a bit more than that.
August 2024
On August 2nd, three days before her 89th birthday, mom fell out of her wheelchair face forward and experienced a contusion to the forehead. She was transported to South Seminole Hospital ER (which is a $250 co-pay, speaking of incidentals) and, while there were no severe injuries from the fall, she was diagnosed with COVID-19 and elevated troponin levels (which indicates a possible stroke or heart-attack). She was admitted and later diagnosed with Dysphagia (difficulty swallowing) and was placed on a thickened liquid diet during her 10-day hospital stay. Except for Ensure and store-bought Orange Juice, she hated all of the liquid meals they served and so she wasn't eating much. The ALF would not accept her back unless she quarantined for 10 days due to her COVID diagnosis. She developed pneumonia and was placed on oxygen for two or three days. She recovered enough to return to the ALF. This was one of several hospital stays mom experienced over the past 18 months (most of them due to UTIs) and each time was an ambulance transport at $250 a pop. When she returned from the hospital she was weaker each time and never fully recovered to her previous state.
During her SSH stay, Advent Health hospice contacted me and recommended that I begin hospice care. I learned that hospice is not just for end-of-life care and can be started much earlier if needed. As an example, former President Jimmy Carter has been on hospice care for over a year. I agreed and hospice care services followed mom back to the ALF. Advent Health waits for the patient to be discharged from the hospital before they can admit her into hospice care services and hospice is paid for 100% by Medicare. Hospice brought in a high-back wheelchair and a hospital bed, both of which were an improvement for mom. And a nurse visited almost every other day. Last Thursday (August 22nd), during a hospice visit, the hospice nurse confirmed that mom was not eating and had now become unresponsive while sitting in her wheelchair in the main dining area. The hospice nurse instructed staff to take her back to bed. The nurse called me, alerted me to the situation and recommended that we begin Morphine, which I agreed to. When I arrived at the ALF, I tried to wake her up, but she would not respond to me, which was a first. I thought she was gone at that point. Two hours later, she awoke, was able to answer my questions and was able to eat a bit. Morphine started that evening (at the ALF all meds must be scheduled and cannot be given as needed). When I visited on Friday morning, she was already on a 2nd dose of Morphine and was no longer eating anything. At first, I tried giving her water through a straw, but she couldn't suck on the straw hard enough to drink the water. So, I gave her water slowly by tipping the cup in her mouth. She coughed each time (an aspiration risk) and so I had to transition to an oral swab, soaked it in water and encouraged her to suck on the swab and swallow the water. Even that made her cough.
At this point, I knew we didn't have long and so I encouraged my brother to visit her (the two of them were very, very close). On Saturday, my brother arrived and sat with her for a while. While he sat next to her bed, he began hearing a faint rattle in her throat and asked me what was going on. At first, I wasn't sure, but then as the rattle grew louder, I remembered my experience with my sister just over two years ago. I explained to my brother what a death rattle was and what it meant. Later, my nephew and his girlfriend arrived. My nephew Facetimed one of my nieces and my second niece Facetimed me (I'm new to Apple phones and this was my first Facetime call). We had an impromptu family reunion through a double Facetime session telling mom we loved her.
Now mom had a roommate who was.. not just interesting... but a full-on, total whack job who tended to panic and yell out... "I'm scared... I'm scared" among other things. Mom initially complained about the roommate, and I didn't believe what she was saying until I experienced the whacko for myself. It turns out, mom was telling the truth. Sorry mom!!! So, to avoid triggering a panic session, I would typically leave the room as soon as the staff returned with the roommate, which happened shortly after dinner (about 6pm). The staff also prepares the resident for bed by changing cloths, a bathroom visit, etc. and so, you really don't want to be there for that. I warned the family that we would need to leave soon. And, no, there are no private rooms available for times like this unless you want to pay for them... remember, broken healthcare system.
The last thing mom heard on Saturday was family saying we loved her and laughing and carrying on. And my brother whispered something to her that I didn't hear. I believe that was all she needed to move on. We all left the ALF shortly after 6pm. At about 10pm Saturday night, just as my Ambien and muscle relaxant were kicking in (really good timing now that I think about it) I received a call from hospice telling me that mom had passed. They asked if I wanted to visit the ALF to see her. Now, driving on Ambien is one thing.. which I've never attempted. Driving on Ambien and a muscle relaxant I'm sure is quite a different experience. My guess was I would be hitting curbs, trash cans and parked cars while I attempted to get to the ALF, and so I opted not to visit. Advent Health Hospice took care of the rest and I am forever grateful.
What I have shared is a small fraction of what has transpired over the past two years. I share the details because I'm not the only one in this world who has or will experience similar events. Working with Medicaid and ALFs and hospitals and ERs and doctor appointments is, to put it bluntly, a $@&@#*% nightmare. I work in healthcare, and I think I understand the system well enough. Even still, this experience was extremely difficult, and it shouldn't have to be in the richest and most powerful country in the world. (I won't get political)
In at least two different instances at this most recent ALF, I discovered incidents that occurred to mom where the ALF covered it up. For example, no one told me about the COVID-19 outbreak in the ALF, and yet suddenly one day, everyone was wearing masks. I wore a mask every time I visited by rote because I didn't want to bring in something and infect mom or other residents. There was also a breakout of scabies which no one alerted me about. Yet, the ALF charged me, through the pharmacy, almost $80 for a cream used to treat scabies. Really!??
In January, mom had a brief stay at a rehab facility located behind APH after one of her UTI related hospital stays. Mom rolled out of bed and landed on the floor face first. Thankfully I visited every day after work and I found her in the bed covered up as if nothing happened, except that she had bruising all over her face. She was not strong enough to get up without assistance let alone get back into bed and cover herself up. I struggled to get the staff's attention and demanded that paramedics be called all the while documenting the room and her injuries through written notes and photographs. She was transported to ORMC ER and the case was documented as an "unattended fall". I called Morgan and Morgan to initiate a lawsuit, but they declined to take the case, and I had no time to pursue the matter further. And, from a law enforcement perspective, there was no criminal act to pursue. I know, because I asked an OPD officer at ORMC ER.
And remember that fall from the wheelchair earlier in the month? Well, one of the staff members mentioned to me a rumor that a staff member was actually pushing mom through the dining area in her wheelchair when the fall happened. Of course, that's not the story I was told and at this point I can't prove anything.
I kept a journal for most of the work I did for mom in case family asked what I was doing and for use as a reminder of what I experienced and when. I will be using that journal to share our story so that others who go through a similar experience at least have some kind of clue about what to expect, what to look for, where to go. I had no idea. This entire experience landed on my lap with no instruction book, no help, no notice, nothing. What I have learned is that the government (both State and Federal) expect you to do all the work, pay until you're broke, and then, maybe, they will step in to help but only if you follow many, many steps to get that help through Medicaid. After working a lifetime and paying into the system, to date, the sum total mom received from Medicaid was.... wait for it.... $1,700. That's it. In 2022, Medicaid spending grew to $805.7 billion (CMS.gov).
I was lucky in that mom didn't have Alzheimer's or severe dementia. She was forgetful, but to her very last day, she understood what was said to her and I didn't have to struggle too much to communicate with her. Others have experienced much worse and so I'm grateful that my experience wasn't. I have a job and a boss that allows me to be flexible with my time and I will be forever grateful for that.
My Message To You
Be prepared. Get informed. Have a plan, especially a financial plan. Ask questions. And show up. Watch those ALFs like a hawk and complain the moment they don't do what you are paying them to do. And don't expect to be told the full, honest story when things go wrong. Many of the caregivers are good people that truly care about their patients. Some are not. And, while you are lost in the dense fog of caring for your loved one, it's difficult to distinguish the good from the bad. You'll make mistakes like I did when I went with the private ALF. And the work will be the hardest you have ever experiened in your life. It was for me. But you will come out the side a better person and you'll never, never have any regrets. I know I won't.
