Navigating the journey called dementia (Part 2)

And…..we’re back. In Part One, our focus was on ‘Looking for Joy’ and ‘Celebrating victories’ – always remembering to smile big. In this next part, we will discuss a few strategies that can go with you further down the path and help in your quest to finish well.

1. Develop a new Normal. Change happens. Let’s say that yesterday, Mama could tie her shoes. Today’s normal is that she doesn’t even know what shoes are. That’s okay. Expect it. Roll with it. Normal is fluid. Maybe tomorrow she will be able to tie them again. Or not. Never automatically assume that you and your loved one is on the same page about, well, anything really. We, as caregivers tend to think somewhat logically. Your loved one usually does not.
   • For a while, I could sorta gage how Mama’s current abilities were by handing her a pair of socks and placing her shoes by her feet. Then I would say something like, “Let’s get ready.” And either leave the room or simply move out of her line of vision. On good days, she would proceed to put on her socks, then her shoes. Some days she would put on her shoes – then her socks. On days that weren’t the best, she would continue to sit and hold her socks – not moving or making any attempt to put them on. At that point, you get an idea of her current cognitive level.
   • Perhaps the next activity will be a meal. Present the food, drink, napkin, and silverware. Yesterday she may have placed her napkin in her lap and used her silverware to eat. Today, fingers are her tools of choice. You might even be in a restaurant when that happens. Again, that’s okay. Perhaps that’s the new normal. It may help to say, “Hey Mama, try using your spoon.” That little nudge may do the trick. You might need to place the spoon in her hand giving her muscle memory a chance to kick in. It may be that nothing helps. Today it’s the fingers. The important thing here is to keep your eyes kind and wear a big smile.
2. Sing. Read. Pray. The day will come when using her fingers was cause for celebration. Like time, the dementia thief marches on. All the while snatching pieces of memories and parts of abilities while tearing holes in your heart.
   • On Tuesday Mama could take the wrapper of a chocolate chewy vitamin D square, on Thursday she would pop the entire thing in her mouth – wrapper and all. But then the day arrives when there is no response. Chewing ceases. At that point, she is only fed liquidized foods. A day will arrive without her voice. This was one of the saddest aspects for me. I actually grieved over the fact that I could no longer hear her voice. It would have been so easy to record a visit or two. Let me urge each one of you reading this to try recording your loved one. Perhaps ask some questions or have her say specific words or names. Mama could still sing with me long after all the rest of her abilities left. If your person still has the ability to sing, that would be marvelous to record.
   • The day will come that even singing will stop. At that point, you sing. Or you read, or you pray. They may not respond, and it may feel a bit discouraging. Don’t give up, remember, a part of them will know what you are doing. I read an encouraging article that stated, “Even if your loved one doesn’t remember that you visited, their emotions (and spirit) will retain the love and joy they experienced of your time together long after you leave.”
3. And lastly. This is where we come to the most important thing you can do throughout this entire journey. SMILE! Remember, it’s not about you, or how you feel –
   • Perspective, I believe makes a huge difference in the ability to experience more joy as each of us strives to finish well our own journeys. I’ll close with a quote from Mama who had a keen insight and attitude regarding her (ever-changing) life. She said this long before she even developed dementia. Whenever she was asked how she was doing, she would respond, “I’m in awfully good shape for the shape I’m in.” 😉