Looking For Long-Term Solutions for Mom

I was pretty naïve Palm Sunday when I called the nurses’ station at a skilled nursing/rehab center where my 91-year-old mom is currently staying and asked them to do me a favor.

“Hi, my name is Melanie and I’m Ginny’s younger daughter” I began. “When you have a moment, can you go to her room and turn on the television and put it on CBS? Tiger Woods has returned to play in the Master’s Tournament and I think she might benefit from watching something she loves.”

“Yes, I’m actually her nurse and I can do that.”

Many readers of the blog may remember that I have previously written about mom’s devotion to Tiger. In addition to watching every tournament he’s played in, she actually created a newspaper collage in 2019 after Tiger won his 5th Masters Tournament, taping it to a side mirror on a wall.

“What do you think?” she had asked, grinning when I turned the corner of the room and first saw it.

“I’m blown away” was my truly honest reply. I had never seen her do anything like that in my life.  Somewhere, somehow, she connected to Tiger. In fact, even when she was placed in her first Memory Care unit, she was telling ME about Tiger’s near-fatal car accident; there was a television in the common area.

With my call, I had hoped that watching him, even for a while, might bring some joy…and focus. Honestly, it is a miracle he is playing golf again at all.

I visited Ginny just a few days later. After a hospital stay in late March, she had been transferred to a medical facility for rehabilitation. The second floor has 60 rehab patients and the first floor holds 60 residents in long-term nursing care. Given her previous assessment (click here), I was more interested in placing her in advanced nursing care.

But in the medical maze of Medicare, she could receive advanced skilled nursing on a temporary basis only if she entered “rehab” directly from the hospital.  And having her in “rehab” would provide time to consider Ginny’s next step. We already knew that she would not be returning to her room at her Memory Care facility as it was clear her needs are advanced now, not to mention that the chronic staffing shortages (which have literally crushed the entire healthcare industry over the last two years) were affecting her well-being there.

So, my husband and I joined my sister and her husband in a “family care planning” meeting to discuss options. This is a standard meeting scheduled by the rehabilitation center for all patients.  The term “rehabilitation” does feel at odds with the reality as her doctor had referenced hospice only three weeks prior. But with new medication to calm her dementia and erratic behavior, and a small amount of physical therapy to keep her moving (she is in a wheelchair now), hospice was not part of the conversation.

 We focused instead on our wish to place her in a long-term nursing care home once she is discharged. There was a brief mention by the director of Nursing about alternate Memory Care options and “activities” for mom, which was slightly alarming as she didn’t initially seem aware of mom’s condition. We explained that there would be no more Memory Care. In hindsight, I wonder if they thought she was “exit-seeking” which does require a specially designed space with safety measures to keep them from wandering. I can only say that there isn’t the slightest chance that she would travel from the second floor to the first and then find her way out of the front door. She is barely mobile.

Choosing a long-term nursing home, however, does squeeze us into a corner because Medicare will only be paying for “rehab” for so long, and finding a new “bed” is easier said than done. The place she is currently staying in has a wait list for their long-term care housing floor and they are not alone. Many of the better nursing homes have wait lists. To clarify, an example of “better” includes plenty of qualified staff, an M.D. and/or Nurse Practitioner on site, respectful interactions with the patient, a clean environment and extras such as a beauty parlor and enrichment activities. Realizing that every adult child naturally wants this for their aging parent, only raised our stress level astronomically for finding something before she was discharged.

Unfortunately, the social worker, an employee of the Center and the person who works in conjunction with Medicare and Medicaid to find a “bed” was not present at the meeting, so we left with no compelling answers other than she was not on the schedule “yet” for discharge.  We were assured that they wouldn’t release her until there was a solution, but finding that felt like a Sisyphus task; and would it be the right solution for her?

Then, a new day dawned. We returned to the facility with the single focus of seeing mom once more before we started our long drive home.  While there, my sister suggested that we look for the social worker in her office and have an impromptu conversation.

It worked. She happened to be in her office and she had received notes from the Director of Nursing regarding our discussion the previous day. And without hesitation, she said something that the four of us will remember forever.

“We’ll just keep her here” she announced. “She is scheduled for discharge from rehab in 8 days, but we will just keep her on that floor until there is an opening on the first floor.”

I heard my husband ask “is this a dream?” It was absolutely surreal. If we hadn’t popped in, we’d be driving home still stuck in the maze; digging for ideas and new alternative places to call. Surprise, relief and gratitude washed over us as we all four stood awkwardly in her small office.

It had been only 20 hours ago that mom was theoretically at the end of every wait list for every facility.  We had also been given no encouragement for placement right there. What had changed? What paperwork and checklists and patient reevaluations for Medicare and Medicaid were completed which allowed them to be willing to suddenly “hold” her indefinitely upstairs? The senior healthcare industry is so layered and intertwined with the government and rules, it is overwhelming to try and follow their complicated alchemy.

I found a quote in a senior care blog from The Stanford Center for Longevity where the author states “Although I earned a doctorate in public health. I could not navigate the health care and elder care system successfully for my mother. She was hospitalized five times in the last year of her life; three times in the last two months of her life.”

If he couldn’t, the general public doesn’t have a chance in the maze. We will probably never know what changed for Ginny.

On that first day, I had gone up to the second floor to spend time with her. She had been to lunch and was now in the hallway in her wheelchair. Her head was down, but when I said “I think that’s mom right there” to the nurse accompanying us, her head moved up and she looked straight at me. She knew my voice. We wheeled her into a vacant “Activities” room.

It was then that I realized that she would not have been able to either watch or understand about Tiger Woods. She was less verbal than my last visit. BUT more than once, she looked directly at me with an extended intensity, staring at me like she was willing me to understand something in her mind. I strongly felt the connection she was creating, but was unable to decipher her silent message.

And her connection with Tiger provided yet another new parallel. In the same week, they both experienced their own versions of a miracle.


15 thoughts on “Looking For Long-Term Solutions for Mom

  1. So affecting, Melanie. I feel the pain and marvel at the passage to a not-so-small miracle with your mom.

    As you know, my sisters and I have navigated the labyrinth of elder medical care. I how remember the rehab-hospital merry-go-round. Your mother recognizes your voice and responds–I know you cherish moments like these.

    Yes, as you say, it is all a “complicated alchemy” and you are doing a superb job. Still, it is energy-sapping both emotionally and psychically. You will not regret honoring Ginny in this phase of her life. Brava! :=D

    Liked by 1 person

    1. I am very touched by your support Marian. Yes, it took both my sister and myself a few days to recover from the emotional toll/stress of it all. I appreciate that you recognize the issues. Sadly, it’s a rite of passage for most people I guess and everybody does what they have to and hope it’s the best solution. There’s no training for getting closer to end-of-life pain. Your words mean a lot Marian. Thank you. ♥♥

      Liked by 1 person

  2. What an awesome post, Melanie! You’ve covered so many important topics in one post. So much of health care is layered with all of these side trips that lead to dead ends. Sometimes problems miraculously get solved after weeks of frustration by simply talking to the right person with the most human solutions.

    The other issue your post makes me think about (I’ve been carrying on about this one for quite some time) is with people living longer lives, the need and expenses will continue to grow. It’s heartbreaking that someone’s health care comes down to what they can afford rather than what they need. Society has not come to grips with this realization yet, and what is an enormous problem down the road.

    I recalled your previous post about your mom’s fascination with Tiger Woods. Though I’m a terrible golfer and rarely watch it on television, I pay attention when Tiger is involved. The fact that he was in the hunt for the first two rounds after being lucky to walk again after being out more than a year was miraculous.

    Liked by 1 person

    1. It has been more of a journey than I could have ever imagined Pete. I thought it was a long road through Covid and lockdown and 2 Memory Care residences. Our family is constantly learning. That’s a nice way to put it about “human solutions”. The decision maker weighed mom’s age and impairments and said “she probably won’t understand another new place, so why put her through that?” That was compassion, she didn’t have to do that. And the government works hard to cover costs for the elderly, but it is a bureaucracy and just falls short. They need to get more forward thinking since as you say, people are living longer lives. I hope they can think out of the box for the next generation. Thanks so much for your input here.

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  3. Quite a post Melanie…and quite a journey. I am happy for you and your family that your Mom is now in a place that hopefully she will remain. What a journey. And the thing here is-you and your sister and spouses have been completely and totally involved in the process-and you still had so many hoops you had to jump through. I cannot imagine what this must be like for all those out there that do not have the love and commitment to making sure their parent(s) are taken care of. You could (literally) write a book. I love that you sensed that “connection” with your Mom while she was staring intensly at you during that last visit. I like to think she was giving you her thanks for understanding her wishes and for being right along with her on this ride. Moms and daughters…it’s link like none other!

    Liked by 1 person

    1. Hi Pam. That’s an interesting point about how much harder the process might be for those who are not really invested. I hope compassionate staff fills those gaps. I love “you could literally write a book.” Some days I think maybe I should. ❤ I’ll admit I’m curious for the next visit to see if I can get whatever message from her, but it’s very comforting to think that she knows we’re there for her. Thank you for your caring support. 🤗

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  4. Melanie,
    Beautifully written. My heart goes out to you, your sis, family and course, “Ginny”. It has been such a difficult journey. So thankful for the miracles♥️ along the way. I am a big Tiger fan as well! 😂
    Many hugs to all.

    Liked by 1 person

    1. I am so happy that you visited the blog and read this post about mom Liz! It means a lot. Thank you for your support and encouragement. ❤ I know that lots of people in this world face these issues and I want to share what I can and hope that a reader finds something in the stories. I LOVE that you’re a Tiger fan too. Mom would love that. 😊❤

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    1. Serendipity definitely nudged us towards the breakthrough we needed that day. My sister likes to think our relatives who have passed are watching over us…and I don’t think she’s wrong. We somehow always get through whatever is needed, Thanks so much Debby for your support. ♥

      Liked by 1 person

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