Anne Belliveau shares the story of her mother’s experience living with dementia while undergoing treatment for cancer

My 81-year-old mother was in the middle stages of dementia when she was taken from home to the emergency department at the Cobequid Community Health Centre in Lower Sackville, N.S.

After a worrisome 12 hours in there, we received the news: her large intestine was blocked due to a huge tumour. The tumour was just a portion of the cancer that had spread to all of her major organs.

Mom quickly forgot her diagnosis. We were devastated, and looking back, I blame the dementia for masking this disease, but that is a different story for another time.

Two days later, she went into surgery. The tumour could not be removed, so a colonostomy was performed and we were told she probably only had a few months to live.

I think it is imperative to note that I believe my mother received excellent care during her month-long stay in the hospital, and it was largely due to the excellent staff and a family that advocated for her continuously. However, we must not ignore important issues that require resolution.

Our first concern after Mom was transferred to a surgery ward was her safety. She did not remember where she was or why. She did not remember that she had a catheter or an ostomy bag with which she required assistance.

The family knew it was not safe for Mom to be alone. A family member was with her each day from 6:30 a.m. until 10 p.m. We had to convince the staff to arrange for a sitter for overnight care on more than one occasion.

One night, she tried to get up on 16 separate occasions, and without support she would have fallen. For the first few days of her stay, our family spent a great deal of time educating the two charge nurses on Mom’s level of dementia. On many occasions, we experienced staff asking her questions that would affect her care, but due to the dementia, she would often fabricate an answer or answer inappropriately.

Although the charge nurses remained constant in Mom’s care, she had a different nurse with each rotation, and not all were educated on dementia or her abilities.

At one point, family asked for there to be a sign posted on her bed to inform all auxiliary staff that she had cognitive limitations.

Hospital staff felt this was an invasion of her privacy and therefore, this idea was not implemented. As a result, nurses, laboratory technicians, food service workers and transport clerks were not aware of, or educated in, ways to best communicate with her.

Mom would not have been able to complete menu request forms or sustain a level of eating that would prevent malnourishment if it were not for family.

Shortly after Mom’s surgery, the focus of her care was to build her strength, preparing her to return home. She was denied extended physical rehabilitation due to her dementia, as she would never be able to live independently.

Sadly, Mom did not regain all of her strength and was eventually released from the hospital one month later. She was transported home by ambulance to live for nine more months, bedridden, under the care of her family and an incredible team consisting of palliative care, Victorian Order of Nurses (VON) nurses, continuing care and continuing care assistants.

This came with its challenges, but again a story for another time.

I call on you to take my mother’s experience as one small example of the work that needs to be done to improve dementia care in our hospitals. Together, let’s demand it from our elected representatives. [ ]