Heartfelt Journey

I had noticed over the last few days leading up to my mom’s hospitalization that something was off with her, but every time I suggested that we go to the doctor she would have a complete meltdown.  Two nights before the 911 call, my mom called me in the middle of the night that she was having trouble breathing.  This would happen every so often and most of the time she was having an anxiety attack.  Once I would calmly talk to her and help guide her breathing, usually using box breathing method, she would catch her breath and calm down.  This night was like the rest, and I was able to get her breathing back to “normal” however the oximeter showed a reading of 91%.  I knew this was low, but in the past doctors had advised me that given her congestive heart failure that 91% was acceptable.  She went to bed and the next day all seemed normal except she was slower than usual and more fatigued.  Two nights later she woke up not being able to catch her breath.  I tried the box breathing method, but this time it did not work, and she lost consciousness for a few minutes.  She was also struggling to speak and seemed confused.  As I was calling 911, she regained her ability to speak and started fussing about me calling an ambulance.  This time I would not be deterred in calling for help.  When the ambulance arrived, oxygen was in the low 80s.

Once we arrived in the emergency department, she was immediately given a room.  Once the doctor assessed her, she was admitted for fluid buildup due to the congestive heart failure. The ER doctor noticed that she was struggling answering questions such as date, year and where she currently was.  He asked if she had dementia.  I told him I suspected she might, but we were waiting to undergo an assessment with our family doctor.  He advised he would put in a request with the geriatric department for her to be assessed.  This was a big win, we would finally have an answer.  I knew that the diagnosis would not change the outcome as there is no cure for it, but it would provide support for me in taking care of her.  About 5 days later, she was through the assessment and was formally diagnosed with Moderate Mixed Dementia – Vascular Dementia and Alzheimer’s Disease – between a stage 4 & 5. The doctor also proceeded to tell me that we should have received an assessment and diagnosis back in April 2023 when she was hospitalized.  During this hospitalization, my mom had a CT scan. The doctor said that he saw changes in her brain from those scans and given our conversation and her current moderate diagnosis he believes she should have been diagnosed back then. As much as I know there is no cure, we may have been able to maybe do things differently delaying the progression of this disease.  We can’t change the past. Now that I have the diagnosis, I can begin the journey of learning about this disease and how to make her life comfortable for remaining time with us. One thing that has surprised me is how this disease can affect a person with no family history.                 

If you’ve made it this far, thanks for reading.  I will continue the journey in the next entry.