Dementia – My Personal Journey of Discovery

My Personal Journey of Discovery,

What I Learned by Advocating for Mom by Denise Walker

Back in 2007 mom had TIA, was admitted to the hospital, and because she also has a dementia diagnosis (and is unable to express herself verbally) she was diagnosed as an aspiration risk and the Staff refused to feed her. The hospital immediately recommended hospice for end of life care; however, she was able to understand simple questions albeit with a slow response time.

In addition to the lack of food, the hospital refused to provide physical therapy as well so I had to both feed and walk with her each day myself. On one visit the doctor warned me that she would certainly pass out if I got her up and walked her (and urged me not to), and further stated that she will get pneumonia if I feed her. I walked her anyway and observed the doctor standing there with his mouth dropped to the floor in shock that she did not pass out and was able to walk. Needless to say this doctor was terminated from mom’s care, and I ended up bringing mom home and she has done fine ever since on a normal diet.

In July of 2010 mom kept clearing her throat over and over again, at that time I worried that she had lost her ability to swallow due to her dementia progression and that we may be near the end (as I have heard this so many times from her hospital visits); I took her to Emergency department where a doctor informed me that due to her dementia progression she no longer had the ability to swallow and there is nothing left for them to do (advising me to consider tube feeding or end of life care). However upon completion of blood/ urine workups everything was normal.

Plus the fact that I know her best, and she hadn’t changed cognitively speaking but just kept clearing her throat. I had requested the hospital to x-ray her to see what was going on exactly. They refused, sticking to the notion that her dementia has progressed causing this decline.

So I requested a swallow evaluation, in which her attending Nurse provided and failed her as she was unable to follow instructions – which in turn is an automatic admittance to the hospital (they were wanting to discharge her from ER.).

During her hospital stay Doctors, Social Workers, and Nurses all advised that I needed to make a decision for hospice end of life care, with further discussion of morphine care, or tube feeding. As she was an aspiration risk, the nursing staff refused to feed her “again”, so I would go down and attempt to feed her daily. On one visit I asked her if she had something stuck in her throat, she was very clear at that moment and said, to my surprise, “yes”.

After explaining this to the doctor and requesting further tests, he was standing on his original diagnosis/prognosis.

So following my gut instincts and knowing my mother, I came home and researched ‘swallowing difficulties with dementia.’ I learned to request an “endoscopic evaluation”; meanwhile I was being pressured to make a decision, and threatened that they would place mom in a nursing home without my authorization. So armed with this new information I contacted the doctor for a meeting and explained that I would not authorize discharge or any further determinations on mom’s care until this procedure was provided.

For the first day and a half, the doctor refused to order due to liability issues, and the difficulty of the procedure for my mom. Then the doctor said he had ordered it, however it was up to the Gastrointestinal doctor to decide if he would do or not, and I was further advised to sign a waiver of liability.

Well you know this was scary for me, all of the warnings they were giving me about the procedure and the things that could happen including and up to death. But I had to follow my gut instinct and met with the GI doctor, where I had to sell him on the idea that I know my mom best and don’t believe it is the progression of dementia that is causing the swallowing difficulties since all of her labs were good, and that she had indicated there was something stuck in her throat …. In which some of my thoughts were a tumor, a growth, scarring from acid reflux, and several other things I had researched that could cause this. I had also told him I wanted to see the film of her throat as well.

So, after approximately 45 minutes the GI doctor came out with a big smile on his face and proclaimed that my mom is the “luckiest woman in the world” explaining further that he has never seen anything like it. I followed him to his office where he had his computer screen up and explained that mom’s throat and esophagus had no scarring and the tissue was excellent, then to my surprise and his, there was a sliced carrot that was sitting in her throat right near the air hole; he was able to remove it without complication and gave it to me in a cup.

Oh you know I hugged and kissed this doctor, as this was such a huge relief for me. So for 4 days mom barely received any food and was weakened by her hospital stay. Upon requesting an order for her to receive tray service and food the doctor had ordered a swallow evaluation in which she had failed, stating that it is still time for the end of life decisions.

At this point, I requested another swallow evaluation during my presence, I needed to see for myself. Another was ordered and I observed the Therapist not even attempting honey thick liquid, and just failing her, stating again she is at risk for aspiration pneumonia.

Needless to say, I was furious, and terminated her services, and requested another therapist for another swallow evaluation, and to try the honey thick liquid… keep in mind she has barely eaten anything for 5 days now so it was an adjustment for her to eat again. The second Therapist passed her for honey thick liquid, however still an aspiration risk, and the Staff “still” refused to feed her.

So I had to feed her; did she cough, gag, and have an appearance of aspiration? Yes. However, my feeling was that if she is able to cough that the risk for aspiration pneumonia was much less, and in addition, a reasonable outcome to feed her in lieu of tube feeding or morphine care for end of life measures.

What the hospital Staff failed to understand is that just because my mom doesn’t speak in normal sentences does not mean she is not still in there. And she was there. We provide her with a pureed diet and the Frazier protocol, which is straight water without thickener and food is pureed and thickened for her.

As of April 1, 2013, mom has never contracted pneumonia or aspiration pneumonia, and yes sometimes she still coughs and has the appearance of aspirating, I am a big believer that it is imperative to follow one’s free will to live, and as long as she continues to eat we will be there.

Of course, my concerns with hospital care for the elderly is not exclusively that of my mother or step-father. I talk about my experience with his care on our Placement Questions page.

I have noted other incidents with Residents that initiated unnecessary and premature hospice care consultations:

  1. A Resident strained a knee, 93 years old.
  2. A Resident had a bleeding ulcer, 92 years old. 
  3. Resident had a bout with Shingles, 86 years old
  4. A Neighbor had a bout with diarrhea, 95 years old

This information shared with you is to inspire and urge you to advocate for your loved one in any care setting, and as a reminder to also do your own research, follow your heart and own gut instincts.

Hospitals are a necessary part of care planning, however, the nursing staff and doctors see patients for 5-10 minutes per day, and review charts of findings to make generalized recommendations.

If you have any questions or comments regarding any of this information, please feel free to phone me anytime at  (916) 489-2578.

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