Finding Your Way
We had limited resources to help us when we first began our journey down the road of dementia with Mama. It was back in the early 2000s, and although the terms, dementia and Alzheimer’s were well known, the only books we could find at the time on the subject were medical journals.
I remember that occasionally a stranger in a grocery store or restaurant would offer an opinion on how we should be caring for Mama – even if they had never been in our situation. Their suggestions often began with the word, “Don’t” – regarding food, activities, or places we went. Most were not meant to be critical; they were simply trying to tell us a better way to care for Mama. It reminded me of Aesop’s Fable from my childhood, “The Man, the Boy, and the Donkey”. The moral of that story was: “Please all, and you will please none.”
Our goal as caregivers
My sister Peggy, my husband, and I felt that our goal should be to try to bring as much joy as possible into Mama’s life. She enjoyed music, dining out, and social events – so we attended concerts, ate at restaurants, and took Mama everywhere we went – even swimming (in her case walking with flotation devices). To be honest, there were times when it was like having a 4-year-old in an 80-year-old’s body. We needed to be very attentive and had to be ever alert to her moods and feelings. When she was done and wanted to go home, we were done – and we went home.
Finding the joy
We sure had some fun times. Mama especially loved musicals – particularly “The Sound of Music”. We had it on a DVD and would play it over and over, and over. We sang all her songs. We also played two-square with an exercise ball – Mama would sit on the couch, and I would stand a little ways away and bounce the ball to her, she would (usually) catch it and bounce it back. Even though she didn’t know who I was, she loved all the attention and the activities.
We also tried to keep mealtimes a happy event and fed Mama healthy foods that she liked. Another thing that helped was making sure she got all her meds at the right times and keeping a close watch on her blood sugar levels. She always enjoyed a small glass of wine in the evening and had a comfy bed where she could listen to hymns playing softly as she slept.
We learned what did and didn’t work. Our family motto was, “We’re doing the best we can, and so is Mama”. If Mama got upset at something, we realized over time to not take it personally. We would tell each other, “It’s not you, its the disease talking”. Our goal throughout the entire journey was to help Mama finish well. From this side of heaven, we believe we accomplished that.
Discovering AlzAuthors
After writing a book to share our story, and hopefully help others on the same journey, we discovered and joined an organization called AlzAuthors. They have the resources we had been looking for back when we were just beginning. They offer over 300 books, blogs, podcasts…and more! These publications spring from a well of experience as the lives of all the authors have been touched by some form of dementia. The books, blog posts, and podcasts, as well as links to additional resources all, share hope and help – not opinions and criticisms.
Because of the vast number of publications offered on this site, you should have no problem finding several stories from folks who are on a path like the one on which you find yourself traveling.
Check out AlzAuthors today to realize that you are not alone; others have traveled a similar journey and can help you find your way.
Has your world been touched by dementia?
My book, “FinishingWell: Finding Joy in Dementia”, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find joy on your own, unique journey. Find our group on Facebook
Wow! Very insightful! I love the way you all followed her lead at the same time keeping your momma safe and healthy. Thank you friend for making this resource available.
Alzheimers/ dementia is very prevalent in our Owenby family. My dad Lloyd had it as did his father Ira, and both of his grandparents George Washington Owenby and Alice America Lewis Owenby. I don’t know what specific dementia they had. I was my dad’s caregiver for 4 years and I can see from your blog that I was doing the right things,trying to keep him active and happy.
Linda, its good to hear from you. You sound like a very loving person – it’s wonderful that you were able care for your dad. Keeping someone active and happy is one of the best ways to care for a loved-one.