Heartfelt Journey

We have a diagnosis, now what? That is the question I kept asking myself.  The doctor at the hospital advised that there wasn’t anything we could do for her as there is no cure.  She is also in the moderate stage since her diagnosis came so late. Fear set in since I know nothing about this disease and with no cure what am I supposed to do.  The doctor put a referral into the Alzheimer Society for me and advised to go to their website and look at workshops I can take to better understand this awful disease. After the diagnosis she was discharged, and we came home to a new normal that I was not really prepared for.

Before she was admitted to the hospital, she seemed to be able to do a lot more things on her own.  After her discharge from the hospital, it was as if a new person came home who didn’t have the ability to do all the things they did before.  She no longer remembered how to make her coffee, how to clean herself properly when she went to the washroom, she no longer could shower alone and would get confused with preparing herself for bed. Now she was also completely forgetting the day/month whereas before she would only occasionally forget. This was overwhelming since I didn’t fully understand what was going on, why she was different after a short hospital stay.  With her discharge came multiple appointments and weekly calls with nurses.  A few days after her discharge, I took her to our family doctor because her behaviour was concerning.  He confirmed that this was the progression of the disease, and it is known that after a hospital stay, even a short one, can impact the brain.  The weekly call with the nurse also confirmed what the doctor had said.  This was now our new normal and she would progressively get worse. The doctor said there wasn’t much we could do, my main job now was to make sure she was safe, taken care of, taking her medications and kept comfortable for the remainder of her life.

For the first week or so home, I honestly didn’t research Alzheimer’s or Vascular Dementia.  I’m not sure if I didn’t because I was too afraid to know or if I was just procrastinating because I knew it meant changes were in store for us.  I finally decided to start researching and began learning that it was me who needs to learn and change to support her, not the other way around.  I learned, as the doctors had said, this disease is progressive, and she will get worse until she passes.  As I researched, one thing stands out to me, how cruel this disease really is.  This disease isn’t just about forgetting people, like portrayed in the movies, it’s about a lot more.  Not only do they forget people, but they also forget to about hygiene, doing simple tasks, finding the right words when speaking, repeating questions, their personalities change, they can become paranoid, struggle with anxiety and depression and this is just to name a few. It was overwhelming and scary. I recognized some of the behaviour changes in my mom and wondered what was next. I didn’t have to wait long to see some more changes in her, starting with her continued, growing resistance to changing her clothing and showering. As well as her newfound fondness for my husband who she’s hated and hasn’t spoken to in years, even though we all live in the same house. Let the adventure begin. 

Going forward, I am planning to write about the progression of her disease, the changes and situations that happen. Hopefully this will help others who are in similar situations by reading our experiences.

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