Best guess: If you guess something, you give an answer or provide an opinion which may not be true because you do not have definite knowledge about the matter concerned.
This definition, from the Collins Dictionary, accurately describes what it’s like to take care of someone with Alzheimer’s Disease because we can’t know what they might be experiencing at that moment. So, caregivers are often forced to guess.
Caring for a person with Down Syndrome & Alzheimer’s Disease, well that just adds another layer of ambiguity.
As Alzheimer’s progresses, the sweet parts of Michelle’s personality are fading away, including how she communicates. So, when something’s wrong she frowns, makes raspberries, yells, pushes us away, or cries. But, you can see Michelle smiles, too.
The Language of Alzheimer’s
Now, we’ve become interpreters of Michelle’s sounds and facial expressions. As she uses words less and less, we’re learning that sometimes taking our best guess is the only option. But, she definitely lets us know when we guess wrong and we do because, as the definition says, we don’t have definite knowledge about what concerns her at that moment.
We can tell when Michelle feels discomfort because she expresses it through frowns, raspberries, yelling, and pushing us away. This new language is how she communicates pain, fatigue, being hungry or full, thirsty or tired, and any other needs she can’t verbally express, or maybe, just not today. It’s hard to put your finger on it.
No guessing here. Michelle is very happy!
Don’t get me wrong, Michelle can still speak. But, between Down Syndrome and Alzheimer’s, her cognitive ability has greatly diminished so she’ll often say yes for no, or vice versa. And that’s why even taking our guess sometimes leads to unpleasant behavior.
Wouldn’t you be upset, just a little, if no one understood what you were trying to say?
But we’re learning to understand, adjust, calm, and comfort her until we see a smile again. I suppose that means we’re becoming interpreters of her behavior and facial expressions, and our guesses are getting better. These adjustments are fleeting, though, because what works today may not work tomorrow. Then we’ll try it again next week, and Voila! We’re back in business for the moment.
I guess you could say we’re learning the language of Alzheimer’s. On the other hand, I think learning French would be more fun. (And that’s saying a lot since I nearly failed French in high school.)
Who is we?
I say we because my husband is in this with me. He has remarkable patience with Michelle, and that compliments (or softens) my get-it-done approach. And he has a willing heart to help me and shows it by helping her. Maybe that’s because he’s already gone through Dementia with his mom, and he knows it only gets more difficult. Or perhaps it’s just because he loves me that much.
Whatever the reason, I’m sure God has a hand in it and for that, I’m grateful.
Are you in a caregiving season?
Please leave a comment and let me know if you learned something new in this post. Like, Share & Comment — Thanks
Posting in the Five Minute Friday & Inspire Me Monday linkups.
References:
Alzheimer’s Organization – Read the full article: Down Syndrome and Alzheimer’s Disease
HarperCollins Publishers Ltd. (n.d.). Best guess definition and meaning: Collins english dictionary. Best guess definition and meaning | Collins English Dictionary. Retrieved June 22, 2022, from https://www.collinsdictionary.com/us/dictionary/english/best-guess
Visit the Confessions of a Family Caregiver page for more stories about my caregiving journey.
I appreciate you sharing something so vulnerable here. I am sorry you are walking through this painful time with your sister. Praying for you as in these moments you hold close.
Stephanie, thank you for this heartfelt comment. It is very hard, but there are moments of joy we can hold close.
Love and appreciate this perspective on taking our best guess.
Thanks, Eileen. Sometimes all you can do is gather the information available and take your best guess. As I said, Michelle lets us know when we get it wrong.
I find this particularly fascinating as Alzheimer’s is something I know a little about from a carer’s perspective. The new-to-me connection to Down Syndrome is really interesting to me, as my brother-in-law has Down Syndrome too.
PS: I love the photo of happy Michelle and Pete.
Dawn, Thanks for visiting and commenting. The connection between DS to Alz was new to me, also. My husband, Mike, is the one who noticed telltale signs of Alz and did the research. That’s when we found a neurologist who confirmed Michelle’s condition.