What Alzheimer's looks like from my point of view as the daughter of a mother with the disease.
Clearly, it sucks.
It's maddening. It's crushing and cruel.
It causes strife in the inner circle and division where there should be unity.
It steals brazenly in front of your eyes and makes no apologies.
Loved ones turn on one another in its wake.
Self-doubt and uncertainty hang around, making it challenging to stay focused and resolute.
Guilt. So much guilt for so many things - none of which can really make a difference even if you could set them right.
A rollercoaster of emotional waves in a short period that have no rhyme or reason, and give no warning before they overwhelm you.
Exhaustion. Total fatigue physically and mentally.
Entirely too infrequent moments of joy, happiness, and connection.
Fear. Will the agony of watching my loved one drag out for years? Am I horrible for thinking that? Is this my own fate in 10 or 20 years?
Having to remind myself to breathe when my mother reacts irrationally, and that her mind no longer functions as it used to before the disease invaded her mind.
Realizing that as much as I try to do the right things, I will always be prone to human moments of error and impatience.
The path to caregiving from a place of love, patience, and reassurance is wrought with hurdles and pitfalls – most of which come from decades of an established relationship and its reactions. The knee-jerk response to an outburst is always followed by regret. I've done far better than I expected I would, but there are still so many improvements I need to make. It does little good to berate myself over my missteps, so I choose to simply acknowledge where I fell short and try better moving forward.
Alzheimer's constantly changes the rules of engagement and caregivers need to be adept at moving with as much grace and flexibility as they can muster. They need to know when to switch gears, and what to say in almost any situation where their loved one is fearful or confused that won't exacerbate the issue. It's a daily, sometimes hourly, game of this is where we are at right now, and there is rarely advanced warning.
Knowing how to respond to my mom when she doesn't recognize me is dependent on me reading the interaction carefully. I'm learning there are subtle cues before she ever utters the painful words "I don't know who you are" or "How do I know you, again,' and it makes a world of difference in her level of agitation if I become the 'stranger' before she has to say anything. I need to be ready to go from calling her 'mom' to using her first name in the next breath. Luckily, I've teased her by calling her by her first name throughout my life, so when she recognizes me again and I don't catch on right away, she isn't phased by hearing me use her name. Of course, there's a part of me that wants to be able to navigate this disease with the same familiarity and ease that I did in our pre-Alzheimer's relationship.
All I can do is continue to learn, seek out resources, and be patient – with myself as much as with her. This isn't a race and there are no prizes for being a stellar caregiver in record time. Every day I learn something new, and every day I find adjustments I need to make. It's a crash course in being a better person all while dealing with the depth of sadness and loss. I am not the same person I was a year ago and I won't be the same person I am now when this is all over. Despite being thrust into this right along with my mom and our entire family, I know I can find the bright spots to hold on to. It won't be easy, but nothing worthwhile ever really is.
When I fail, I commit to doing better. On the days I'm overcome with grief or anger, I remind myself that I need to stay focused to see the moments I can cherish. If I find I'm taking things out on others, I need to step back, breathe, and admit what I'm really upset about – then apologize. Each day, I resolve to do the best I can, to love my mother unconditionally, to treat her with dignity even when I don't understand, and to help her through this horrible disease with compassion, patience, and as much peace as I can bring forth in this life.
Finding resources and assistance, as well as remembering the importance of self-care will increase the odds of navigating the ups and downs in ways that preserve as much calmness as possible. Which will also decrease unnecessary stress and upheaval. At the end of the day, I'm just a daughter trying to do the best I can for the woman who raised me, but if anything I experience and share can make a difference to someone else in a similar situation, I'm willing to put it all out there.
It's not always pretty, but it's 100% real.
No comments:
Post a Comment