The horse's mouth is a good place to start.
While I've never been in combat I have gathered from my extensive knowledge of nothing pertinent to this conversation that those running the battle field prefer to have full intel of their enemy's positions, strengths, weaknesses, and latrine locations in case they have to go potty real bad.
As a family caregiver, I am warring against dementia daily. Oh sure, I know we're gonna lose this fight but that doesn't mean I shouldn't arm myself with expertise on my enemy's wily ways so I can score as many defeats as possible - before we fizzle out in a blaze of sorrow.
To do so I utilize social media to follow the true generals of this war: the men and women who are living with dementia. These top brass front-liners have first hand knowledge of our common enemy; they know that of what they speak.
One such commander is Wendy Mitchell.
Don't let that twinkle in her eye and welcoming smile fool 'ya -
this woman is a warrior.
Wendy was diagnosed with young-onset dementia in July of 2014. She found speech frustrating early on in her progression so she fell back on her typing skills as her go-to communication, utilizing her keyboard to maintain her connection with the world.
"I have never ‘tweeted’, ‘blogged’ or ‘facebooked’ in my life but since I was diagnosed, everything else in my life has changed, so why not this. . . . this blog serves as a reminder of what I’ve done and said in the past – it now serves as my memory. If anyone chooses to follow my ramblings it will serve as a way of raising awareness." ~ Wendy Mitchell
She has certainly raised my awareness through her blog, her tweets, and the book she's written about her experience with dementia: Somebody I Used to Know: A Memoir.
Through all these mediums Wendy has commandeered the Awareness and Advocacy Battalion to give those of us on the caregiving side of the battle fresh intel on our adversary.
One of Wendy's recent blog post struck me forcibly because it's the first explanation of how dementia works inside the brain that gave me a clear understanding of our enemy's occupation within Mom's head. She gave me permission to share this excerpt.
"We have a complex brain disease. . . . Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. . . .
However I never dwell on what I can’t do. I never dwell on my losses, we have no control over either. . . .
Clinicians focus on ‘There’s nothing we can do for you” instead of focusing on what we still CAN so. That makes it even more important for those around us to believe in what we can do and support us to continue living. I have two amazing daughters, Sarah and Gemma, who enable me rather than protect me. The biggest thing dementia has taught is is the power of talking so when dementia throws a challenge, we talk and try and find a solution. My mantra is ‘There’s always a way’, we just need the kindness and support of others to help find that way out of the situation.
Dementia is certainly a bummer of a diagnosis and it can strip away your self esteem, your memories, your abilities. But we never forget how people make us feel. We forget the detail in the blink of an eye, but emotions remain strongly embedded as it’s a different part of our brain that’s often left in tact. I’ve already apologised to my daughters if and when I forget who they are, but tell them to remember that I’ll always love them. . . .
Dementia may be terminal, but then so is life, so I enjoy each and every moment, the simple things in life are now more precious, time has taken on a whole new meaning and if today is a bad day…well tomorrow may be better."
Wendy Mitchell
Which me am I today? (blog)
January 2020
As Mom and I win and lose our skirmishes with dementia I am grateful for the courageous call-to-arms that Wendy and other warriors living with the disease lend to our campaign. Their insights allows me to know my enemy, a priceless gift that inspires this war weary soldier to carry on.
P.S. If you'd like to add the insights of folks living with dementia to your caregiver journey, here's a couple of other dementia people I check in with:
Janice Swink (Twitter @JaniceSwink) - Exuberant on her good days, and brutally honest on her bad ones - I'm grateful for both.
Tommy Dunne BEM (Twitter @TommyTommytee18) - Tommy says it best on his profile: "Living with dementia (Alzheimer's) not suffering with it. I may not have enough time left to see a world without Dementia but I hope to see one that accepts it."
Michael Ellenbogen (Twitter @MichaelEllenbog) - Michael has turned his diagnosis into an international advocacy effort, speaking with policymakers and changing dementia perceptions world-wide.
FTD Doesn't Bring Me Flowers - Living with FTD (blog) - Kudos right off the bat for a great blog title! This blogger has been living with frontal temporal lobe degeneration (FTD dementia) since 2014 and also cares for her husband with Alzheimer's. That's a powerful resource to access for caregiver education - a person who has incredible insights into both worlds - that of caregiver and of a person experiencing dementia.
Alzheimer's: The Journey (blog) - Brian's is living with Alzheimer's. His advocacy has taken the form of a personal blog as well as public speaking throughout the U.S. and Canada. His positivity is infectious, even when he's giving a neurologist a beat down!