My mom and I have known since probably last summer that my 78 year old grandmother was experiencing difficulties with day-to-day life, and over the course of the last year she began to drop weight at an alarming rate and have more and more trouble with things like using the ATM machine, paying bills, grocery shopping, and just the stuff we all have to do in life. Her house is about an hour and a half away from us in the town where I was born, and we spent most weekends this spring and summer trying to help her until things reached a point where it was clear weekend visits just weren’t enough or sustainable. She was forgetting to eat through the week, and it was costing us a fortune in gas driving 3 hours back and forth, nevermind the stress and worry when we weren’t there.
It’s really sad to see someone you love begin that decline, and it was all the more difficult because her forgetfulness and confusion seemed so intermittent. Some days she seemed perfectly fine, and other days she couldn’t remember how to tie her shoes or use a zipper. One minute she’s ranting about someone in the family in perfectly normal-for-her fashion, the next she’s lost in the town where she’s lived for 50 years.
To compound matters, she’s been a “collector” (aka a hoarder) for at least all of my lifetime, and her always packed to the rafters house began to slide into an even more disorganized, cluttered, and dangerous mess than usual. She’s never had furniture or living spaces like most normal people’s houses, but there were at least always clear pathways to the main rooms and around the tv, the kitchen table, etc. Over time, though, even these areas became cluttered and unnavigable, with cords and wires and boxes and bags and plastic tubs of stuff every which way so that even I could hardly get from room to room without tripping.
And in her confusion and forgetfulness, she began to develop delusions to explain why some thing that she swore she hadn’t moved was suddenly in a new place in her house – someone must be living in her basement and sneaking up to move things. And the thing she was looking for and couldn’t find – someone must have stolen it. The delusions became so complex and detailed, and so frightening to her, that she began hiding weapons around her house, and carrying big butcher knives around so that the man living in her basement couldn’t attack her.
It got to a point where it was truly dangerous to leave her alone. She was so upset over the man in her basement she wouldn’t even leave the house to go get groceries or eat even when we came to help and assured her we’d checked the basement. She was calling the police every couple of days about the man in the basement and was becoming outraged that they wouldn’t even go down there to look for him after a while.
It was clearly time that something had to be done. But what? How do you start that process?
A Confusing Process
It turns out that the answer isn’t very clear, or wasn’t very clear to us anyway. We spent weeks making phone calls and searching the internets for advice, and we discovered that at least in Indiana, most of the social services and institutions that we assumed would be able to help us couldn’t. Adult Protective Services cannot intervene until or unless someone files a complaint that an elderly person is being abused, neglected, or exploited. Obviously we were trying to deal with the situation BEFORE any of those problems came to pass. The police couldn’t intervene unless someone filed a complaint that she was a danger to herself or others. And though she was certainly a danger to herself, we didn’t feel like the criminal justice system was the appropriate path to take.
We spoke with her doctor, but he was little help at all and in fact was rather insensitive to the situation and made it much worse – after that visit, my grandmother refused to speak to my mother at all and I was caught in the middle. Though I’d hesitate to allege outright fraud, when we discovered how often her doctor was seeing her, how many tests had been ordered, how many different medications he’d prescribed, all for a patient who was clearly suffering from some kind of dementia.. you have to wonder how much Medicare $$ he made from her visits and if that had any influence over his decision making process.
It was really pretty scary, knowing that she needed help but unable to figure out how to start the process to help her. In the end, we discovered that she had to have a psychiatric evaluation and then my mother could apply for emergency temporary guardianship, though even that is complicated by a new law Indiana passed this summer to guard against “granny snatching” since we live in Ohio and she is a resident of Indiana.
All of the legal stuff aside, the emotional stress was another terrible weight. We had been talking to her all summer trying to convince her to move to Cincinnati closer to us, but she didn’t want to leave her house, her town, her community, her friends. And who could blame her? She wanted to be in her own house, with her kitties, where she’d lived for many years. She was adamant about staying. But it was obvious that wasn’t an option, so what to do?
Diagnosis: Alzheimer’s
Finally she was admitted to the hospital for another complaint and eventually qualified medical staff diagnosed her with Alzheimer’s, delusions, and dementia and that made it easier for my mother to get guardianship, but once that happened it opened a whole new can of worms. Which facility in Cincinnati was best? What level of care? And how expensive could she afford? My mother and I toured facilities and asked questions, tried to compare the various options with what we thought would work best for my grandmother, even as my grandmother felt imprisoned and angry that she couldn’t go home, stuck in the hospital and sometimes enjoying the respite from her worries about her cats and the thieves she believed were robbing her and other times upset about being away.
We eventually selected a facility but her transfer from the hospital to the new place was frightening for her, and she’s still having trouble adjusting to the new circumstances even as she seems to enjoy the increased stimulation, company her own age, and the activities they have at the memory care unit. I think for the most part she doesn’t realize what actually has happened and she often wonders when she will be able to go home, and when she remembers, worries about her cats. Mostly I’m happy to know she’s somewhere safe even if I worry she’s frightened and worried about being away from home.
Reading about Alzheimer’s is scary too, the disease progression is unpredictable and we have no idea how long it will be before she doesn’t recognize us or doesn’t know where she is, and the late stages.. well. I guess we’ll just have to take things one day at a time and do the best we can to make sure she has good care.
What I’ve Learned
I’ve learned a few things from this process that I wanted to share while it was on my mind, in case you or a loved one ever has to face these difficult decisions:
- No matter how young or old you are, you (yes you!) NEED to have a living will and durable medical power of attorney documentation drawn up, signed and witnessed, and filed somewhere easily located (and hopefully shared with your designated caregiver) so that when the time comes that you are unable to care for yourself, someone you know and trust can do this for you. DO NOT WAIT. Do not think that you’re not old enough to worry about it. Everyone should have this, and especially if you have children. It will make what is already a horrible situation so much easier for your loved ones who need to be able to help care for you.
- Don’t be afraid to ask your friends and colleagues about their experiences with aging parents. Some of the most helpful advice for both me and my mother has come from our social networks and from friends who have gone through similar experiences. It really helps to know that others have faced what sometimes feels like having to choose between least worst options for someone you care about.
- And above all, talk with the people you love and trust about your wishes regarding end of life issues or what you would prefer if you become incapacitated. While thinking about such things is not particularly pleasant, I feel closer to my mom too, as a result of all of this, and feel that I have a better idea of what she will want when the time comes, and I’ve also talked to her about what I would want if something should happen to me – and that gives me some comfort.
Thanks to my friends and colleagues who’ve sent well wishes as we’ve been going through this stressful process, and thanks to the friends and communities I’ve neglected in recent weeks for their patience.
Fleep hanging out with Alan and Joanna at NMC Summer Conference 2007.
CogDog’s mom, Alyce. Image courtesy: 
Three generations, my mom, my grandma, and me.
I won’t belabor the point, we’ve all heard plenty of analysis and finger-pointing, but I will repeat the headline from my initial blog post at the beginning of the end of the beginning of the crisis:
It’s possible I am living in a concrete-reinforced, super-duper-thick, no-sound-enters-or-escapes echo chamber, but it seems that everywhere I turn, everyone from _everyone_ is convinced that the American educational system is in desperate need of a massive, major overhaul. In my own neck of the woods, 
The first problem is that the thing I want to study not only doesn’t have its own discipline or recognized curriculum, most people aren’t even aware it exists! My area of study is the metaverse and I spend far more time trying to demonstrate that it is “real” (ie has real impact) and justifying why we should be studying it than anything else. What time I do get to spend on actual research doesn’t count towards tenure, and unfortunately, most of my output is in blog posts and wikis and PDFs and Second Life builds, and none of these things will get me a degree either. They aren’t “accredited” kinds of output.
When I think of it, I tend to tell myself and others that I can’t find the time or money to go back to grad school right now (artifical limit, I’m sure I COULD if I were willing to radically alter my life), but the truth is something different: I can’t bear the thought of fitting my learning style back into that crummy old model when I’ve found something 1000000 times better – the entire web is my school, my laboratory, and my teacher. I would guess that in 2008 I read more reports, white papers, and peer-reviewed journal articles (and thousands of blog posts and news articles), attended more lectures by more world-class thinkers and teachers (and talked to them, individually!), and had more hands-on, active and engaging learning experiences than I have ever had in any other year of my entire life – in school or out. I also spent a heck of a lot of time reflecting on what I learned, sharing it with others, collaborating on shared learning experiences, and had a few pretty nice 
And of all my learning experiences online this year, I’m perhaps most grateful for my experience with the 
My suitcases are tattered from so many cross-country flights here there and everywhere talking about Second Life, Web 2.0, and the emerging metaverse. I gave talks at conferences and workshops and lunches, to teachers, professors, administrators, instructional designers, businesses, entrepreneurs, laywers, government employees.. so many different sectors of society. What I’ve taken from all my days on the road is that there’s a real lack of perceived value and ROI. 1) People need to see more evidence that this technology is useful for accomplishing their goals before they will be willing to invest the time and resources it takes to get to successful implementation. 2) The technology itself must become cheaper and easier to use.
But Linden Lab’s 
Yes, I’m sorry, this one gets a whole bullet point of its own. Do you have ANY IDEA how long I waited, and with how much _anticipation_ I waited for the release of Spore? (Many many years, and a lot, respectively.)
