5 Lessons I’ve Learned as a Primary Caregiver

By Patricia M. Annino | Caregiving

Over the past 9+ years spent as a primary caregiver for my mother in her advanced Alzheimer’s state, I’ve stepped back and thought about the five most important things I have learned so far on the journey.

1. Be where she is, not where I am. The long runway of declining dementia includes changing realities for the person affected. In the beginning when my mother said she wanted to go home (and she was home), I tried to explain to her she had nothing to worry about – she was home. That led to an increasingly agitated discussion, with my mother saying this was not her home and she wanted to go home, and my explaining that this was her home. An endless loop of frustration and anxiety ensued. Then one day I “got it.” I agreed that it would be good to go home and said I would take her there as soon as I could. She accepted that, was calm and forgot about it. Five minutes later, she brought it up again, and again a half hour later. We repeated the conversation, and the loop went on, but now without anxiety or anger.

2. She has a right to her anger – respect it. In the beginning, when my mother was more fine than not and had a glimmer of what was happening to her, she sat on the couch and kept repeating to herself, “What is happening to me is criminal,” and she would shake. When I looked at her, I knew that in some part of her she knew that her walk down a very long runway was well underway, and it was not going to get any better. There was no cure, and there was no turning around. Alzheimer’s dances on the mind, not just on the brain. If you have Alzheimer’s, chances are you will be stuck before resolution. The brain will not let the mind get there.

3. Not everyone is going to step up to the plate and help – and that is okay. In every family, there will always be those who do more and there will always be family members who don’t. If you are one of those who takes on a lot of the duties, be sure you also take care of yourself. You made the choice to be the responsible one in this and probably every other aspect of your life. If you have chosen not to take on the caregiver role, have compassion for those who have and don’t assume that it is okay to have them do all that they do without a break. Think about ways in which you can help. Perhaps you can show up this Sunday and do the grocery shopping? Think about what you can do. Don’t ask permission. Jump in and help.

4. Think about what has meaning, and focus on that. In the beginning years when my mother knew who she was, but was not able to live her regular life, I began to ponder what was important to her. Staying in routine is familiar and comforting. My mother always went to Catholic Mass on Sunday. At different points in her life, my mother went to daily Mass. As she had begun to slide, I began taking her to daily Mass and it was fascinating to watch. When she was in church she knew and recited every prayer, knew when to stand up, sit down, and no one in the church watching her would have understood what she was going through. Ritual, faith, routine and dignity matter. Years later, when she had severe anxiety attacks, I would fold my hands together and start to say the “Hail Mary” prayer. She would join in and her anxiety would dissipate. Finding that special connection to a safe place of dignity and peace is important.

5. Evolve as the disease progresses. Adjust what you are doing and what she is doing as the disease evolves. Think about the problem and how to solve it differently. In the beginning, my mother would randomly walk out of the house if I was not watching. Then one day — knowing she was deep down a “lady” — when we were in the house, I stopped putting shoes on her feet, just socks. She never walked out of the house again. She was in a place where she knew that she should not walk out of the house in her socks, but she also did not know that she needed to put shoes on. Staying one step ahead of the next issue and thinking about solutions makes life easier for all.

My mother’s journey is far from over. She is physically fairly strong, and although unable to know who I am (or recognize any other member of the family), or feed or dress herself, she is no longer mentally sliding. We are living in a world where the long runway of Alzheimer’s will impact many families in this country. Those of us who experience it will learn much more about ourselves and what matters.