When my mother was diagnosed with dementia, I was lucky to have the opportunity to lean heavily on a dear friend who had been through a similar diagnosis and the passing of her own mother. Five years later, my friend continues to guide me through my journey. I am extremely grateful that she was willing to share her wisdom with you also.
I asked her to talk about five things she wishes she had known early in her mother’s disease progression.
1. How slow the process would be
“It was not only a marathon, but a slow marathon. I think I knew it was going to be slow, but it was EXCRUCIATINGLY slow. It sometimes reminded me of the pain of pulling a thorn out very slowly.”
2. How quickly the patient’s attention can disappear
“This aspect of the disease made it difficult for me not only as her daughter but also as her legal guardian. Sometimes within a single conversation there would be times when she was completely with it, and times when she would be out of it without warning. This made it hard for me to make decisions on her behalf, because I would ask her opinion and not always be able to tell if she was present or not in her understanding of the issues. That left me in a very difficult position as a caregiver.”
3. How you’ll question yourself about everything
“There were so many difficult parts of the disease, but questioning myself about everything as a caregiver was probably the most difficult. There is so much responsibility and decision-making that has to happen. Should we sell the house or not sell the house? Should we put her in a facility or not? I felt really beaten down by all of it. I always wondered if I was making the best decisions.”
4. How angry the patient will sometimes be AT YOU
“The anger was the disease and not the person. I knew this later in the process, but at first, I did not understand this. Part of the disease can involve anger and this anger can be directed at anyone, especially at close family members. You have to be ready for this and it can be absolutely horrible. For us, this was just the beginning of the disease, but it was hard to define when the disease began and when the anger was actually related to the disease. Later on, we had more clarity around this aspect. The further the disease progressed, the fewer anger issues came up. My mom became more peaceful.”
5. How much medical control you’ll lose if the patient goes into a facility
“As a daughter, legal guardian, and professional medical provider, this was really difficult for me. When we put my mother in a facility, we lost some control because facilities have their own rules and their own doctors. So, there were times when I disagreed with what was happening—for instance, when my mother was subjected to frequent medical exams that she disliked—but there was nothing I could do. It made it hard because my mother was helpless and had no voice at the end, so I had the burden of making the decisions that I thought she would most want. Again, it came back to questioning everything.”