1. Things that seem so important to us in our everyday lives just are not. Mom thought it was important that she follow the strict rules of her religion. She had to wear a skirt every day, as well as have her long hair in a bun. Mom never ever wore jewelry and rarely watched TV. Guess what? The aides put her hair in a ponytail, and she wears the Mardi Gras beads that she wins at bingo!
2. Being angry at family and friends for not taking the time to visit Mom in the nursing home/assisted living is not beneficial to anyone. Everyone is doing the best they can. Maybe they won’t know what to say when they visit, maybe nursing homes make them uncomfortable and they don’t know what to do with that feeling. It doesn’t mean they don’t love her, they do. Forgive, and let your expectations of them go.
3. Alzheimer’s does not take away love. Love is too big. Mom loved her God a lot. Alzheimer’s’ hasn’t taken away that love either. She suffers from chronic back pain, and when I ask her how her back is, she tells me it hurts. And then says God is good to me.
4. All that matters is our moments. That’s how Mom lives now, in the moment. All the things we worry about for tomorrow, so much energy spent on pointless worries. All we have is this moment, this day. Stay there.
5. There is some joy in Alzheimer’s. Yep, I said it. Mom did not have to deal with the pain of losing a niece and nephew that passed in their forties, whom she was close to. She doesn’t think about who is paying her phone bill and when she needs new clothes. She doesn’t know her ex-husband passed away, or that a sister in California died from the same disease she has. She doesn’t know that her sister first stricken with Alzheimer’s is the one in the bed right next to her. Or that yet another sister is on the third floor of the same facility with the same disease. She does not know that a fourth sister is now in the assisted living next door with a form of dementia. That is a lot of pain she didn’t have to face.
6. We will be together again one day. Her mind will be clear, and she will see how much she taught all of us by having Alzheimer’s.
7. It’s OK to be wrong. It doesn’t matter who is wrong and who is right anyway.
8. You will have people along the way that will come into your journey simply to help you and then move on (Power of Attorney and Health Care Proxy were not the first things on my brain!).
9. Alzheimer’s disease is a family disease, not an individual disease.
10. I’m stronger than I thought I was. You were right Mom!
About the Author: Christine Dileone MSN, RN, is an Assistant Clinical Professor at the University of Connecticut School of Nursing. She uses the resources of the Alzheimer’s Association in her teaching, specifically on communication techniques with dementia patients to maintain dignity. She is a Ph.D. nursing student at the University of Connecticut, and plans to continue research with individuals with Alzheimer’s. She coordinates a monthly Alzheimer’s support group and is actively involved in the annual Walk to End Alzheimer’s® as well as The Champions in the Fight Against Alzheimer’s Women’s Campaign.