In 2005, my mother was diagnosed with “mild cognitive impairment, which might signal the start of a decline into dementia.” Soon after that, we wondered if her decline had actually started long before, and we've reassessed and reinterpreted the subtle changes we began observing way back in the 1970's and '80's. Hindsight is 20/20.
First, she became increasingly rigid, anger was more easily triggered, and outbursts, often aimed at my dad, became more out of control. My dad sought counseling a couple of times, but the therapists basically shrugged and said that she was too defensive to work with. She'd bristle, “I’m fine—it’s his problem!” and stand her ground. In fact, increasing rigidity, frustration, and anger are common symptoms of dementia, as the person struggles with changes in the ability to communicate, handle sensory input, and juggle all the complexities of daily living. But without more obvious clues, and no revelations from her, how could we have known?
Second, she became more and more isolated, backing away from friendships and then seeking zero social outlets when my parents moved to a different part of the country. She was always very introverted, and with two daughters now living nearby and grandchildren beginning to arrive, we weren’t concerned because her life was full of us. But now we look back and wonder if perhaps she was simplifying her life because dementia had started to set in. Withdrawal is also a common symptom of dementia.
We finally had her evaluated because of her repetitive questions (e.g., “What time are we leaving?”) and failing short-term memory, both of which more clearly indicated that some of her marbles had gone missing.
This diagnosis sounds devastating, but somehow we’ve been able to turn this journey into a treasure hunt, with her unwitting assistance. Here are some of the blessings this journey has bestowed.
She is “pleasantly demented”. Although this sounds like The Oxymoron of All Time, it is actually a widely observed phenomenon, where the person with dementia tends to have a pleasant demeanor, being easygoing, sunny, even cheerful. Particularly when the person used to be more demanding, prickly, or anxious, this can be a welcome change.
For her, dementia’s progression has been very slow. If we consider that her decline started decades ago, we’ve had the benefit of time to adjust to each miniscule downturn. No shock, no trauma. Even after the diagnosis, watching her decline has been like watching grass grow. And rather than seeing this as an agonizingly prolonged process, we’ve made the effort to frame this as a gift of time, wherein we still get to hang out with her and her pleasant self.
She has not suffered. Even after the official diagnosis, she remained the master of denial. Whether this was due to defensiveness, an ingrained desire to be perfect, or a marked lack of self-awareness, she always insisted, “I still have all my marbles!” and “My memory is fine—you all are the problem.” But as a result, she has never appeared to suffer the angst of knowing that her marbles are rolling away, never to be seen again. It also helps that she is in excellent health, still walking at a fast clip, and leading an active life. We can take her out and about easily, and so we often do.
She has become increasingly content during the past 10 years. Part of this, I’m sure, is due to having a proper diagnosis, and us being able to coordinate appropriate, compassionate care. And so, as her memory and abilities fell away, we reduced our expectations and adopted her responsibilities (with the indispensable help of a kind, compassionate caregiving team), so it’s as if she is on a permanent vacation. As she declined in her ability to imagine the future and create or execute plans, she no longer worried about “what next?” and truly started living in the present moment. And unlike many people with dementia who forget what happened 5 minutes ago but retain old memories, all her memories faded, so she no longer holds grudges or regrets the past. Or as my dad says, “She’s forgotten why she was always so angry with me!” It’s as if all has been forgiven, and she idealizes and adores him. In fact, he’s the one she still recognizes the most. And even though he shoulders the burden of ensuring her ongoing care and suffers from not having the kind of intellectual companionship he wants, he is reaping the benefits of her loving presence.
Her sweet essence shines, pure and true. In fact, about all that’s left is her essence. She can’t remember what happened a minute ago. All memories have faded to black. Her language and vocabulary are almost completely gone. She’s lost her knowledge and information about nearly everything, from how to put on her pants, to why she needs a shower, what time of day it is, where she lives, or who any of us are. But we should all be so lucky to live the pure and true life she’s leading. She sleeps, wakes, eats, and uses the bathroom when her body tells her to. She is eager to be active-- to swim, play ball, and help us around the house (with close supervision and simple direction). She makes genuine eye contact, brightens when we appear, gives the best hugs, orients completely to where we are and what we are doing. She laughs when she sees or hears something funny, and cries when anybody gets sad or frustrated. Indeed, interacting with this pure, sweet essence is a joy.
Like many grown children of elderly parents with dementia, I too bask in these blessings. I so enjoy her unabashed affection, and we’ll snuggle on the couch or in bed—something that NEVER would’ve happened before dementia graced our lives. I am filled with gratitude for this. For sure, at first and for years, dementia took my mother away, but dementia also brought her back in ways that we can all lean into, with love.
In the next post, I elaborate on the role we’ve played in my mother’s continued contentment. Indeed, the quality of caregiving has a huge impact on the quality of this journey.
I blogged about my mother’s dementia back in 2013 and 2014—here I make sobering observations about her decline becoming significant enough to ramp up care at home. Here I report on the skills we’ve had to learn to deftly dance with dementia. And here is the start of a six-part series, in which I report on the time my mother went on an Excellent Adventure, driving away to who-knows-where, and our own adventure of searching, getting word that she’d been located, and dealing with The Authorities. What a saga!
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