You might not even consider yourself that popular "c" word (caregiver) bestowed on many. You're simply the one who stuck around when all others have drifted away. One day you look around and it's like, "Hey! Where did everybody go?!" So you settle in and prepare yourself, because preparing yourself you must for every case scenario. After all, it isn't as if you've never crossed the bridge a few times before. So you prepare yourself for the false accusations sure to come. At times from people you know, or thought you knew. Other times from ones outside the regular realm, like professionals. Others, something as simple as driving the person to the bank to collect their small, very small actually, stipend you actually add to help stretch or to pick up a prescription, can test your patience and question how in the world did Job put up with such clowns in his day? But you learn the patience of Job and then some. Because shallow people will always be shallow no matter the circumstance. Out of guilt? Insecurity? Or just mean? Can't really say.
"Job, how did you put up with these idiots?" In your mind, Job responds "Pity the fools!" Oops! That was Mr. T. You're slippin', old girl.
You even have a near 30-year-old scar as a reminder of what not to do. Never walk up behind an individual suffering memory loss or any forms of dementia and startle them in a loud voice that may sound threatening to them. Many days you're reliving with them in the times and periods they lived, and experiencing what they experienced in the past in the present. Something they may have experienced/witnessed 60 or more years ago that threatened their safety or even their life.
No matter what the individual is doing, even if they're peeing in the driveway as a busload of school children happens by and you're rushing up to provide cover out of fear someone might accuse an old man of exposing himself to children on a school bus, and the police might come rushing up and harm him. You must remember to proceed lightly, calmly and quietly. No loud voice and no sudden movements. Don't grab the person. Especially, while behind them.
But you learn as you go. There's no instruction book. After all each person is different because each individual's life experience is different. If they tell you they smell rain and we need to go out and round up the cows, it's because they grew up or worked on a farm. And you simply say, "Okay, Pops. I think I smell rain too. We get those cows rounded up." A moment later, a nap later...and they've forgotten about both the cows and the smell of rain. And always, always, never, never leave sharp objects around. You have to constantly remind the spouse of this.
You learn to use names and terms they're most likely to be familiar with, and convince others to do the same as the memory loss, dementia worsen. They may not recognize the grown man before them as their son, unless he's eating a hamburger he wasn't sharing, but may recognize that son in a picture as an 11-year-old. He might even recognize the voice of Count Basie on the radio station you found that plays old blues and big band music, but only recognize you as daughter, because you've come to use the term which you feel he'd likely be most familiar. Although he never had a daughter.
Among all the false accusations, barbs, insults thrown at you, you try to convince yourself this is the last time crossing this bridge. No more. You're tired. You're bone weary and your own health is failing even. Then you remember all the things you learned. Your tested patience with others mainly. And you realize your strengths along with your weaknesses and fears. The knife that cuts the deepest will come from those you know or thought you knew, but realize you never actually knew.
You learn to value and admire the strength and purpose of the person before you. They are actually teachers, your testers. You respect their efforts to remain as independent as long as they can, so you give them their space and just offer your wing when you see them stumble.
You value the history you learn from them through their eyes and times they lived it. History, you've never read about in any history book, and likely never recorded. Like the story behind the first time the levee broke in Louisiana, and how blacks and, for sure, poor whites too, were allegedly rounded up at gunpoint and forced to rebuild. Can't recall ever reading about that or hearing about that. There's the story of the 11-year-old boy (him) who was taken away while hopping a train into town that ran at the back of the family farm in Arkansas and forced into labor for two years on a plantation in West Texas. And the story of the white lady visiting the plantation who helped him escape and get back to his family who had been searching for him all along. Or his witnessing other children working on that plantation whose family never knew what became of them. And you realize you wouldn't give up the chance at such an opportunity to learn additional history never before documented for anything.
Finally you admit to yourself, if such a chance should come by your way again, even as others disappear, falsely accuse you; through all the barbs, sly insults you'll be on the front line if needed, when needed. The boots on the ground, again, prepared to 'cross that bridge again.'
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What a beautiful and insightful piece just oozing with truth of the caregiver’s experience with dementia.
God Bless you, and please keep writing. Many caregivers experiencing the same are reading your letter. By the way, I enjoy your letters, even when they hit with a politically left hammer.
The most successful organizations in the world of dementia were started by caregivers of dementia patients. They are energized by the caregiver experience. It changes people. The organization, A Place for Mom, has guidance documents on the monumental challenges and at times pure disrespect experienced by caregivers. I have cared for two family members to end of life, and the journey through dementia, even with substantial support, is a real challenge for a long time.
So many hospital stays. They just don’t get it, do they? Dementia patients pull out IV’s, wander, and it can be a real rodeo.
Dementia is not a static condition, it changes almost daily. Just my view, caregivers must evolve and shift, and focus on the dementia needs, and ignore the rest. Caregiving is pure love and sacrifice.
“When someone shows you who they are, believe them the first time.” Maya Angelou.
If a physician, medical person, or family member drops in on their way to vacation and are not respectful to your family member or you as the caregiver, believe them, Brenda, and walk away.
Again, thank you for writing such a wonderful piece. Your letter was forwarded to me by those in the same caregiver situation, and would never write to tell you just how fantastic this piece is. They knew I would write to you.
By the way, the last people standing make a great team.
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Over the past years, Brenda and I have crossed paths. I want to be one of the first to compliment her on the "not Florence Nightingale" opinion piece, This is excellent and very fitting. My wife Deanna has just completed 2.5 years taking care of a sweet elderly lady. Deanna came to love her deeply and as her dementia worsened, all of the situations you so deeply described occurred.
Brenda, what a fantastic Job and you had Deanna at the point of tears with your telling the truth about caring for the elderly,
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God bless you, Brenda. What a beautiful and expressive article. You captured the journey through dementia perfectly. It is a journey that caregivers deal with day in and day out. To see your loved one continually decline is heartbreaking. At times, there are good days, and sometimes you just go with the memories your loved one has and thinks are present day.
I have no doubt that if faced with that journey, you'll be prepared to cross that bridge again. Beautifully said.
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Ms. Washington, caregiver is too short of a word for what we do. It's not limited to dementia related situations. Severe mobility issues of a partner bring on sudden lifestyle changes that are mentally and physically exhausting. Friends disappear. Invitations to traditional get togethers stop coming. Maintaining a home for two by oneself is harder than I ever imagined.
I think there are those who don't know what to say when an old friend can't walk anymore. Kind of like they would rather remember them when they could line dance and create a magnificent Thanksgiving feast for everybody. Whatever the reason, most stroke victims are the same person mentally but become isolated and totally dependent on a caregiver for something as simple as cutting up a steak on the few occasions we venture out to eat.
A caregiver's world becomes very small but extremely dedicated to a special purpose in life. After three years of learning how to function in a different world of mobility, I realize we were put here for a reason.
Bless all the caregivers of the world. For those who look the other way while we struggle to open the door to a restaurant, it's okay, you're in a hurry. For the 90 percent that hold that door for us, it means more to us than we can express with just a "thank you".