Alzheimer's can be a singularly devastating disease. The skills of a lifetime and the markers of individuality slowly fade as sufferers and their loved ones can do little more than watch.
I've often explained watching my mom succumb to this illness as watching her unravel. When I came across the crocheting she did in the early stages of Alz, it made me realize how fitting that actually was.
These squares represent her progression over the course of a year or two fairly early on in the disease (she suffers from early onset and was diagnosed at age 54; I was 22). I don't remember exactly when she stopped being able to crochet for good--she made squares for a while, then the circles, then the little pieces of crochet, until she got to the point where she just carried around the needles and yarn in her purse (which was otherwise empty since she couldn't really hold on to valuables anymore).
To the amazement of many, including her doctors, she has now lived 12 years since her initial diagnosis (they credit the level of at-home care she's been receiving by my family - especially her caretaker and my dad, who is truly a saint).
At this point she is completely non-verbal and unable to care for herself in any way (eating, bathing, dressing, walking unsupervised, etc.), but physically she is still relatively healthy, beyond issues resulting from her mental deterioration -- e.g., she grinds her teeth incessantly, which has caused significant dental issues).
She has been on hospice since the summer, but the doctors say that it could be months or even years before she passes. It has been a few years since she was able to speak and several since she was able to identify who I am.
I admit that I've struggled with advocacy for this disease - early on it was tough because I felt like I was living it all the time, so why would I want to immerse myself further in it. Beyond that, I wanted to preserve my mom's dignity as much as possible, something this disease doesn't really do.
It was hard to share my experiences without feeling like I was unfairly putting her business out into the world. But now, at this stage in the disease and in my own life, I want to do what I can to educate other people. I want other families and caregivers to know they're not alone.
I've always explained this disease as watching the person you love unravel, but someone that message didn't seem to hit home until you literally see it.
Wuillermin encourages anyone interested to make donations here and welcomes any made in Rene's name.