Badass Rescue Mission
- CC
- 4 days ago
- 18 min read
Gene & Sharon: A Love Story & Maybe Now, A Happy Ending!
Fam & Lesbians to the rescue! Amy and I have just returned home from a week-long “rescue mission” of her aunt and uncle from a nursing home facility in Texas. It has been a week of enlightenment, learning, love, laughter, tears, and witnessed miracles. One that we have been privileged to be a part of thus I feel compelled to share it with others because there are lessons here that anyone who has elder family or friends should be aware of - lessons of love and of how our systems often fail people - especially the vulnerable and the elderly… As a colorectal cancer survivor and advocate, I write a lot about the state of healthcare in this country. Elder care is not an area that I have focused on in the past, but as this blog will continue to cover a vast range of topics, and after this recent experience with our aunt and uncle, I’ve decided that this topic is too important not to cover. This is Gene and Sharon’s story…
The Rescue Mission
Uncle Gene and Aunt Sharon lived in a transitional assisted living facility (expensive, exclusive, private-pay) in Georgetown, Texas for the last decade or so. They started out in a very nice two bedroom apartment. A couple of years ago they moved into the “memory care” unit on site because Sharon was diagnosed with dementia, and apparently he was, too - or so we were told. They were in a “lockdown unit”- which we now we realize should have never happened, because neither of them were a flight risk. But it did cost more money for a smaller place, so they moved them. (Who knows what those conversations between them and the facility looked like?) Basically they - and he who seems pretty sharp for a guy who’s supposed to have dementia - have been in a very expensive jail for the last two years. For example, he told us that any weekly activities that are conducted outside the facility, they do not take the “wheelchair” patients on, so he doesn’t go, because she can’t go. I wouldn’t go without Amy either! If you ask me, he's been very depressed over the whole thing. I would be too, if I had been locked inside a one bedroom apartment most of the day with little opportunity for freedom and independence, and given excuses in place of accommodating his/her/their requests and needs. He was also discouraged from helping and supporting her in a variety of ways - including at mealtime.
This is our take of the story, knowing there are multiple sides, but as you will see, others would soon come to agree.
We got involved because they recently ran out of money after spending about a million dollars there over the last decade. And, we also found out a couple of years ago he was scammed out of close to $300k. Where were they then? Where was the bank?… We still don’t have all the details. You might wonder where we were? But as an 85 year old man of a certain generation, you don’t share your mistakes and certainly not your perceived failures with family members who might judge, question, or criticize your choices. He had his pride to preserve. I think many of us would feel the same way if we had been duped. But scammers are so savvy these days and he really is not to blame. In other words, we didn’t know. But the bank and the facility did!
The facility they were living in does not take medicaid so they informed us about a month ago that they had to go or they would be evicted. As we have learned, it’s an investor-owned property largely focused on profit margins more than people.
We were told that Sharon was in “late stage dementia”and so bad off that this trip could put her into serious decline. In fact, we were told in no uncertain terms, it could quite possibly kill her. Because that is what often happens when dementia patients have to undergo such huge transitions at this stage. She and Gene are truly symbiotic, and he too, was not doing well with all of the upheaval. He also wasn’t entirely clear on how all the money they worked so hard to invest and save, was running out. The facility had been auto-debiting his account for years and at times charging $2,000 just for a doctor visit!
As a couple, Gene and Sharon are so in love and so sweet together, and very much connected to one another at heart and hip, so to speak. They are adorable and he is very protective of her - for what are now obvious reasons. We - Gwen (his sister/Amy’s mom - the primary point of contact in all of this), Amy and me, as well as the rest of the family - were committed to making sure they had as smooth a transition as possible. But there were many challenges ahead...
It Takes A Village
We enlisted the help of an “Elder Care Navigator” in Colorado who also luckily had a history of working for nursing homes in Texas. She did much of the heavy lifting to find us a new place. She will also continue to work with us for the year as we navigate this winding road, including applying for medicaid on their behalf and checking to see if he has VA benefits available to him. She vetted several facilities but most could not meet our requirements:
They needed to be able to live together in the same room, not just the same building
Bring their own furniture
Sleep together in the same bed
Eat in the same dining room
They needed better care & more freedom
And if at all possible, NO lock down!
We didn’t realize it at the time but it was a tall order! One facility was more like a hotel room with two twin hospital like beds and no personal furniture was allowed. Another said they had to eat in separate dining rooms since she needed assistance with feeding. Yet another wanted an additional $3000 a month on top $8000 a month for “community dues”, which was unaffordable. As it was, their monthly retirement income would not come near to covering the cost of most of the facilities that were considered. Needless to say, the elder care navigator is worth her weight in gold for the time and effort she put in to find a place that checked most, if not all, of the boxes. In the end, she found a “residential living” facility that allowed for everything on our list and it would provide much more attentive and individualized care because the number of residents is very small. The trade off though is that it would not be quite what they had been used to. Their room would be smaller - though it would be furnished with their things, and it would be a more rustic setting than what they had been living in. They would be trading a waterfall in the lobby and lots of elegant gold fixtures in Texas (which they no longer got to see or enjoy) for a log lodge, with forest views and mountain air in Colorado. They would also be trading a temperate climate in Texas (again, which they never got to enjoy), for snowy winters (which they thought they had given up for good when they left Minnesota decades earlier). It was going to be a tough sell!
After arrangements were made, on August 25th, we caravanned down to TX to pack them up and move them to Colorado. From the first time we walked in their room, I began speaking directly to Sharon (and Gene) because, well, I never considered NOT doing it that way. I remembered her to be a very organized, particular about things, always well put-together person. So I wanted to honor that by letting her to know what was happening each step of the way. I tried to convey that we were doing our best taking care of them and their things, as well as keeping everything neat and organized, etc. She did seem at first (as they told us) severely disabled and possibly mentally checked out, but she’s still a person! I didn't see any reason not to include her on the chance that she was in there and listening. We would soon find out, she was...
Sharon doesn’t move well as she’s essentially paralyzed - which seemed very odd for a dementia diagnosis. Amy said early on that Sharon’s condition was more like our friend’s Mom who had a couple of massive strokes that took out her speech and caused paralysis. Sharon was also considered “non-verbal”. But in the two days we were there to pack them, I realized quickly that everyone talked AT her, AROUND her and ABOUT her but not TO her. Imagine having everyone make all of your decisions for you for years, and never having a say - because no one (but Gene) asked or considered her feelings or thoughts. Or, they didn’t know or didn’t take the time to consider that even if she couldn’t speak, she might be in her head watching, observing and hearing everything, but not able to speak for herself. I’d be pissed! I think she was. Because…
At first she was not only unresponsive but completely stoic - a stern expression often on her face when she wasn't lying with her eyes closed (which we learned later was not always sleep but quiet observation and detachment). Looks like dementia, right? BUT, as we began the packing process, I included her from the start, and then Amy followed suit, she began responding. In little ways at first and then in bigger ways. When her eyes were open, she began tracking our movements with rapt attention. We could tell she was following every action and word we said - even laughing at jokes without prompting. Dementia patients don’t usually have that kind of comprehension, especially in late stages. Then she started using words! Some more understandable than others, at first. We could see she was coming alive! Within ONE DAY! Because we were paying attention TO her and including her in the process of moving. Asking her opinion if she wanted things to stay or go - she could and did nod or shake her head and she wasn’t just mimicking Gene. Once or twice she nodded yes to keepsakes that he said no to, such as some drapes her mother had made, so in they went!
That first day we were there to pack, after I had explained everything to her and started including her in the sorting - where earlier in the day it seemed like she was really out of it - a short while in - I found an old metal flashlight that Gene told me was 60 years old. I laughed out loud, knowing Gene’s sense of humor, and I said it looked like a penis! Sharon laughed and said, “Yes, it does!” It was as if in that moment, the light went on. We all just stared in disbelief!
Every day she improved more, and words became more understandable. Soon, full sentences. Not always, and some still not understandable, but like night and day, she began to communicate.
The Trip To Colorado & The Transformation
Packing and loading took two days, the movers came, then came the trip to Colorado, which would require two long days of driving and hotel stays. We had an RN/EMT (nurse) - who is far more well-versed than the term “nurse” conveys - with us for the drive. She also happens to be the owner of the residential facility they would be living in. She was a Godsend from the start and she volunteered to do this for us so she could get to know them and ease the transition. From the moment we met the RN/Owner, we knew this was a good move for them. We were under the impression that we would be transporting an invalid, on hospice, one who could decline to the point of no return on the trip - and to that extent hospice even gave our nurse morphine to administer during the trip. She never touched a drop! It fact, it was quite the opposite.
The nurse also saw the daily changes in Sharon and started to communicate directly with her - especially during hands-on care. Thus, instead of declining on the trip back, Sharon proceeded to be even more aware and alert! She got more communicative, had a better appetite, started using more facial expressions, and even some arm movements and reflex actions started returning! One day I was outside the car and smiled and waved with two hands from in front of the car, being silly. She responded by raising her eyebrows and waving at me with a kind of wave that the nurse said required deliberate mind/body connection - the kind where you move four fingers up and down like a hinge to wave hello. Sharon even started to hold a cup or bottle of water in her hands and with help, could drink on her own with a straw. One day when Amy was helping Sharon with some water in the car and praised her for how much she drank, she said to Amy, “You can have half,” clear as day! She was also now talking to Gene with some understandable words and sentences. Previously, he was the only one she would “talk” to, but before, it was almost always gibberish. The more she used her words on the trip home, the clearer they got. His face would light up every time he heard a new word. It was so heart-warming to see! They were both transforming in front of our eyes.
The Pitfalls of Elder Care
Most importantly, we ALL started focusing on INCLUDING Sharon in the conversation, decisions and dialogue. Gene saw the changes and was astonished! He then felt guilty as if he could have done something differently to prevent all of this, but he has nothing to be guilty about. We believe they were misled and in many ways, maybe even mistreated by the facility. It’s our understanding that (in Texas) he shouldn’t have been allowed to live with her in memory care - so did they also diagnose him with dementia solely to support their moving him into that unit because it was an additional $5k a month in the facility’s pocket? Further, the nurse told us that Sharon and Gene never should have been in locked-down memory care, because they were never a flight risk. As a disabled resident in assisted living - they should have been offered the care they needed without the move to memory care.
More to the Story
As we all compared notes, the preliminary conclusion that we have all come to is that she was either misdiagnosed or has had a stroke or series of strokes/TIAs (over time) that were either missed or ignored. She has had three falls in the last year - one last July and one last August: She broke her hip and then a rib. Then another in December. We have few details about the falls, but suspect one or all of the falls could have been preceded by strokes. We have no proof of course, but it would explain a lot as she was worse after each one - including the paralysis. There is no mention of stroke(s) in her medical records. The paralysis and the speech issues appear to be more indicative of stroke according to our experience, research and the nurse's experience. If that’s the case, valuable time has been lost in recovering what she lost. Usually with strokes, there is a time-window for rewiring the brain that diminishes past one year. Given her progress in less than a week’s time, we believe there is still hope for more recovery and the nurse is going to see to it that she has every opportunity to thrive in her new setting. The nurse (their new caretaker) is looking to get her physical therapy, occupational therapy and speech therapy (and we’re all praying medicare will cover it).
I want to point out that the nurse has clearly stated she is not a doctor and that we do need a doctor to weigh in on our suspicions. That is now part of the plan in the next couple of weeks; physical and mental exams, including blood work, for both of them.
This doesn’t mean that Sharon may not also have dementia. She might. But with the way she’s been tracking conversations and responding in this moment, it's honestly kind of hard to believe. If she does have dementia - it appears, and we are hoping, it’s less progressed than we were led to believe. Clearly she made it through this trip in better shape than she started it! We will know more in a couple of weeks. Either way, it seems there was negligence on the part of the facility they were in.
Now to Gene. He too, does not really appear to have the “moderate dementia” that’s his chart would indicate, and the nurse says that it could be just old-age-related gaps. He is so quick witted and sharp and also what they call “A&Ox4” which means his attention to detail and orientation is at the top of the charts - that is NOT what "moderate dementia" usually looks like. But a dementia diagnosis would have served the facility’s needs and bank account. Sure, when he is exhausted or overwhelmed, he has some lapses - but frankly after menopause and chemo, so do I!
At one point he told us about a conversation he had with a doctor that was supposed to be diagnosing him, and he said that the doctor told him he “didn’t want any part of this diagnosis,” but never told him what that meant or gave him a diagnosis. Gene took it to mean he must have Alzheimers. But Amy and I wonder if the facility was trying to get the doctor to agree to a diagnosis that wasn’t there to justify their move to memory care? We will know more soon…
The Sad Reality
Gene and Sharon are like so many other elderly people in America. People whom the system (and facilities) is/are failing. People who did everything right! They worked hard, saved, invested, planned for retirement, had a well-thought out estate plan in a 6 inch binder, paid for their funerals (including transportation) in advance, all the things. They are now almost broke and reliant on family and soon the state to help care for them. In most states you have to spend down what little money you have left before you can apply for Medicaid, in Colorado, you can't have more than $3000 for a couple/$2000 single in your bank accounts. The timing game is crazy and there is a 5 year look back which is a whole other ball of wax. So you're literally down to the wire by the time you apply. It's scary! We also learned that Medicaid for nursing home care is different than regular Medicaid, because it only covers your living expenses, while Medicare continues to cover your medical - so things like supplements can still be critical. This is where it's helpful to have an Elder Care Navigator involved.
Like us, Gene and Sharon do not have kids and she has little family on her side. Amy and I will be in a very similar situation (no kids, and no family near by if we live long enough), so we completely empathize with their situation in so many ways. This is devastating to them, especially him. He keeps asking “What did I do wrong? What did we do to deserve this?” The answer is nothing! Add to that, they have likely been taken advantage of from every angle and even (we will soon see) possibly misdiagnosed and had serious life-threatening events ignored - just to meet quotas and fill pockets. All things which have impacted their quality of life, their physical, and mental health. It’s truly infuriating that people can get away with such exploitation of the elderly. That we can just kick old people out of facilities in America (and don’t get me started on how many nursing homes might be forced to close after the BBB kicks in, in 2027).
In my opinion, the staff at the previous assisted living center may have cared for them as people - some even cried when they left. But CARE is subjective, and they performed only the most basic of “care” when they could have helped them thrive instead. Our goal now, is to help them THRIVE!…
A New Home - Rustic Respit
The road over the last week has been rough and full of potholes, but also full of love and hope! For Gene, emotionally, it has been a roller coaster. His initial reaction to his new home was fraught. The nurse’s place is not what they are accustomed to. It is a beautiful, albeit rustic, renovated log lodge that still needs some TLC. She has only owned it for a year and she is working on obtaining grants for renovations. That said, it is full of love as well as individualized care and attention with qualified people who are willing to look beyond the surface and see their residents as people with individual needs and wants, not just numbers and dollar signs. The nurse is a very intuitive and smart professional and she has a qualified staff that follows her lead. She has already gained both of their trust - and ours.
Yes, their room is much smaller than their one bedroom apt in Texas - and some of their pristine furniture must reside in the common area. This will be a lot like an arranged marriage with a blended family, complete with kids, pets and manageable chaos! Something Gene and Sharon never had, nor wanted! But already, we are seeing that the stimulation of those things appears to be good for them. Their minds and senses transforming in wonderful ways! How do we know?
Prior to this week, Gene would not leave Sharon’s side. Some would have labeled it as controlling or interfering behavior, but I see it differently. I see it as protective behavior - and who could blame him! I would have done the same if it were Amy! For example, the last place would never have let him help feed her. The other night Gene helped Sharon eat and she ate more than she ever would have in Texas with a CNA helping her. Because Sharon eats so slowly, it takes her about an hour to finish, much longer than the previous dining room allowed before they would take her plate. If Gene, who was sitting right next to her would try to help, he would be chastised! Now, he is enjoying helping her continue to eat, for as long as it takes, and those calories are essential! And, yes, the staff is also there assisting, for as long as it takes, too.
Gene and Sharon are a team. They have relied on each other for 65 years and they are not going to stop now. That is, as it should be. Everyone should be so lucky to have a love like theirs. They adore each other - it’s clear in every action and word - spoken and unspoken. They should be allowed their love - We allow it - The nurse allows it - Their new home allows it. But the other place did not. Shame on them!
Without even realizing it, in just a few days (we stayed on-site to get them settled and unpacked), he is adjusting. Gene is now getting up and going out to the common area to watch the sunrise over the mountains while she sleeps-in down the hall (something they never let her do in the old place). He’s also allowing them to change and bathe her without him being in the same room. Why? Because he knows he can trust them. They are safe there. They are already loved there. For the first time in years, they are home. He told me he feels like he might be able give her a little space from time to time, now. This is monumental!
Sharon adjusted right away! I keep telling her she’s tougher than he is and that she’s leading the way, and she nods, smiles, and looks me in the eyes, knowingly. She’s in there. I see her. And she sees us! It’s beautiful and touching and so very emotional. Sometimes I have to look away as I cry for what they have been through. It’s heart-wrenching. But we felt good about leaving them there when we finally departed, with a promise to return in a couple of weeks.
Before we left, we all went outside on the deck (yes, outside) and sat in the fresh mountain air with some of the other residents and the nurse - another something they were never able to do in Texas. Seeing them together, they looked like any other couple at a random social event. Something they haven’t done in years. It was magical! This photo says it all…
May They Live Happily Ever After…
Acknowledgements
Efforts like this take a village: We had many people on what I started referring to as our “Dream Team”. First and foremost, Amy’s Mom, Gwen who took this on and never looked back. At 83, she took on almost all of the coordination with the Elder Care Navigator and she’s driven the 2,000 mile trip to Texas more than once! This time, she drove there and provided Gene and Sharon’s transportation back as we caravanned in our RV Van. Gwen has helped deal with their legal affairs, bank and finances as well as a variety of other things in the last year since becoming involved. Including her work with the The Elder Care Navigator who did all the coordination for finding the place, movers, paperwork, and so much more! We are grateful for the new facility & the nurse who owns, it along with her staff - where we hope they will find a true “home” again and allowed to be in love!
If you'd like more information on the facility they were in (in case you have a relative there), the Elder Care Navigator we used, or Residential Facility info, please use our contact form and get in touch.
More words spoken by “Sharon” on the journey to their new home:
“Are you going to stay with us?” (My reply, Yes) “That would be good.”
“Yes, I would like that.”
“Yes, it does.”
“Wow.”
“You can have half.”
And many, authentic smiles and her famous giggle that made us all smile.
Gene & Sharon Update
It's only been a few days since we left them at their new home and already we are getting good reports! Sharon has started using silverware specially designed for people with disabilities, she's using more words each day and she's beginning to stand under her own power when being transferred to her wheelchair! They both had blueberry banana pancakes made special for them this morning and even Sharon said, "Mmmm... That tastes good!"
🎵 "Got Kicked Out Of The Nursing Home" Song & Short Documentary
As mentioned earlier, I wrote a song for the occasion as a tribute to Gene & Sharon and also created a Pixar-style animated video to go with the song! I'm super excited to share this with you because this was my first attempt at this type of music video and I'm beyond thrilled at how it turned out! The Gene and Sharon characters are SOOOOOO cute! Check out the video here on our website or on our YouTube Channel:
You can stream the song for FREE here on our website and tap your toe along with it and you can download it for $1!
Our plans are also to put together a short documentary/social media posts of our journey. We're calling it the "You Can't Make This Shit Up Roadtrip" (#YCMTSU for short) Follow us @CCnDoc on Socials & YouTube to get the announcement when that project is complete!
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