Whenever the topic of preventing dementia comes up, one item that seems to rise to the top of the list is rest – usually in the form of sleep. As in ‘get enough sleep each night’. While that is great advice, there are aspects of rest that need to happen in your waking hours as well. The secret is to somehow find the balance between all the responsibilities you have for your loved one, and your own well-being.
Dementia Steals Our Rest
My sister, Peggy and I had a saying that we would repeat to one another. When Mama, who slowly declined with dementia for over a decade became upset, anxious, or difficult in any way, we’d say, “Remember, it’s the disease talking, not her. Don’t take it personally.”
Dementia stole Mama’s ability to understand her circumstances. She didn’t know why she was living where she was (at my sister’s home or ours), and why she was being told to do things she didn’t want to do (like take a shower), she would sometimes react un-agreeably and want to go home. Of course, dementia also stole the fact from her that daddy had passed away and she could no longer live in their little cottage in the country. Her mind needed rest, and she didn’t always know how to find it.
Rest your mind
One way Mama would find rest was to create a narrative of why she was where she was, and what was currently going on around her based on what she could see. It is called confabulation – also known as ‘honest lying’. In psychology, confabulation is a memory disturbance, defined as the production of fabricated, distorted, or misinterpreted memories about oneself or the world, without the conscious intention to deceive.
This is not something you can argue anyone out of, or as my sister says, “They can’t enter your reality, you have to enter theirs.”
I touch on the subject in chapter 11 of my book, Finishing Well: Finding the Joy in Dementia. “Our brains are wired with a natural ‘need-to-know’. Science has revealed that if we become aware of an object or circumstance that we can’t explain, the left hemisphere will begin weaving and concocting a story to provide it with an explanation.” Mama was very good at that. She would come up with some interesting stories to explain anything she happened to notice. I admired her level of creativity.
Rest your body
Lower your standards. Stop trying to live up to either your or someone else’s expectations. A little dust and a few dirty dishes are okay. Safety and sanitation are important, but excessive stress trying to achieve an unrealistic standard is unhealthy. At the end of the day – or even through the night, all you can do is what you can do. There is a quote from AgingCare.com that sums it up wonderfully, “There is no perfect way to take care of an elderly parent except with the most love and patience you are able to muster on that particular day.”
Rest your heart
Spend a little bit of quiet time in prayer or meditation. Even though there is so much going on in your life, and so much you need to accomplish, consider the example of Suzanna Wesley and how she cared for her family. She was the mother of 10 children, including John and Charles Wesley, who would grow up to shape the course of Christian history, and therefore the world. In the midst of raising and homeschooling all her children – often alone, she took the time each day to sit in her favorite chair and throw her apron over her head to form a sort of tent. The household knew that when she was under the apron, she was with God. Of course, that would not likely work if you are caring for someone with dementia. The point is, stealing away for your own quiet moment will help your soul to find rest.
No matter how hard we try to get it right, there will always be difficult days. When it seems as if you’ve fallen off the wall and ‘all the king’s horses, and all the king’s men’ will not be able to put your day back together again – take heart. Whenever we felt like the world was spinning too fast, our family had a saying we repeated to each other – “We’re doing the best we can, and so is Mama.”
Has your world been touched by dementia?
My book, “FinishingWell: Finding the 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.
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