I realized that this weeks marks the one year anniversary of my mother’s dementia. Not everyone can pinpoint such a moment. My mother could, if she could only remember it. It was election night. Tests have not uncovered exactly what went wrong, or for that matter find an organic reason for the changes, but it was definitely triggered by the election.

After the episode of delirium, which ended in the emergency room with her asking how Kerry was doing every time she came to, she seemed to come back to herself, but in fact her mental condition continued to deteriorate for several months after that. Since the late spring, it hasn’t changed at all. There’s no sign of any improvement, but neither is it getting any worse. The same can be said of her physical condition. She was recovering, or trying to recover, from endocarditis when it all happened. She has never gotten her full stregth back, but she seems to be in a sort of holding pattern - requiring assistance for a lot of things, but she’s ambulatory and her health is holding decently, all things considered.

So, do you think if she makes it through until the 2008 election and Bush is finally out of office, she’ll regain mental clarity as mysteriously as she lost it? I’d love to see it. I wonder if the 2006 congressional elections have any healing potential.

This morning, my mother asked my sister for money, as she does every morning. It’s her own money, but my sister doles out the spending money at $20 a day unless there’s a special expense that day. Mom gets very huffy about this, but the reason is that she’ll blow through several hundred dollars a week if she gets the chance. She’s lost track of the fact that, while she has plenty to meet her needs and some wants, she’s not really all that affluent. She’ll also write checks for money she doesn’t have. Overdraft protection has prevented any bounces, but her math is creative to say the least. Sometimes she’ll just throw math right out the window. The last month we let her do her own bills, she called the bank to check her balance and corrected her checkbook to match what the recording said she had. Never mind the checks that had already been written on that money. Took a while to straighten that one out. So, although she views the whole thing with a degree of suspicion, we’ve taken over her finances and put her on budget.

Usually I don’t know exactly what she has on her, but we were out together yesterday. She started the day with $45 in her wallet and spent exactly $20 of it. This morning, when she was telling my sister that she’d need a bunch of extra money for a lunch date with a friend, I mentioned that she had $25 left from yesterday, so her usual $20 should more than cover the lunch date. My sister said that Mom had only $5 in her wallet. Mom concurred. I went over our day with her and there was general agreement that there should be another $20 bill somewhere, and Mom went off to recheck her bag. A little while later my sister and and I went into her room and asked if she’d found it. No. Did she check all the little compartments in the wallet? Yes. Then my sister asked, “What’s that $20 bill next to you on the bed?” Mom said, as though it had nothing to do with anything, “Oh, I just pulled that out of my bag. “

Earlier this week, before the discussion of older bloggers came up here, I told my son I’d made a resolution about my old age, should I get to have one. I told him that the best thing I could do for him, his sister, or anyone else who might end up with me in later years is to keep up with technology to the point where I stay fluent in the basics. This isn’t as easy as it sounds. Despite the fact that most of my immediate circle of family and friends erroneously think of me as a geek, I’ve already fallen behind. The web is still a pretty comfortable place, but the whole Pod thing has left me in the dust. I know nothing of Podcasts, for instance. I better catch up.

Then there’s the television. It’s not just about changing the channel anymore. It’s about keeping track of a couple of hundred channels that keep changing their numbers. Frankly the TV guides were never designed for so many channels. I find it easier to check listings on the web and my husband, who is the main TV watcher, just surfs most of the time. If my husband falls asleep watching a DVD, my method of switching back to the television is just to randomly hit various buttons until I get a channel. And then there’s Tivo. We don’t have it, so I can’t really help not knowing how to use it, but in general, I have some catching up to do. I haven’t had time for much television in recent years, and now using one is something akin to a skill. I’ve got to get up to speed on it.

What I’ve learned from watching my mother is the reason for this resolution. She was always happiest working. After retiring from teaching, which was her second career, she and my father went into the antiques business full time. They’d been doing it on weekends for several years. Sadly, my father died with his boots on after only six months. He was at an auction at the time. It was the way he’d have wanted to go. A year later we opened a used book and record store with her and kept that up for almost a decade. After that she went to work part time in a book store. When it became a physical impossibility to keep that up she volunteered - at the library, the pantry for the sick, the food pantry and the church thrift shop. She participated in and sometimes led various reading groups. Throughout she kept up an active and busy social life. Sounds great, right? Yes, but what I see now is that you’ve got to have some kind of plan for reduced mobility.

We could kind of see it coming. Not the memory problems. We never saw that one coming. But before that, we were starting to worry when she went out alone. There were three separate incidents where she took a fall that landed her in the emergency room. One in particular was really frightening because it was while crossing a busy road and she could easily have been hit by a car. Then there was the fact that her circle of friends was starting to shrink. She was too busy to really notice, but it was inevitable. She didn’t belong to any senior groups, where there would be a steady supply of new members and her old acquaintances were moving to Florida or giving up driving. She did a lot of the driving when she and her friends were out and about. Now there are only two left who still drive.

It was with this in mind that we tried to encourage an interest in a computer and the internet. We helped her buy her first one when she was about Millie Garfield’s age. She learned to do e-mail and to find the news but she never really took to it. To get truly comfortable with technology, you have to explore a little and try to figure things out for yourself sometimes. That, she never did. She used to like to write and did some of it in her first career. As recently as a year ago, I suggested she start a blog but although her mental state wasn’t even close to what it is now, it seemed to be too late. She never really cared for any kind of electronic communication. She never watched television. She hated it, really, and couldn’t exactly remember how to turn it on and off, even when it was simpler than it is now.

Now she’s home more than she wants to be and by winter she’ll be home even more. She has short term memory loss, but she’s not out of it in every sense. She still reads, but even the most avid reader needs a little change. She gets bored, all the more so because she has so few resources that she’s comfortable with here in the house. She can use the telephone, the microwave and the toaster oven. If she’d used the computer and the television enough so that the basics were truly ingrained in her memory back beforer she started to lose the ability to remember new things, she’d be able to use them now. And she’d be happier than she is now. She’d be connected to the world whenver she wanted to be, on her own schedule. She’d be in control of something very important. Even television isn’t so bad when you’ve got hundreds of channels to choose from and a lot of time to fill. And she loved movies. Going out to see them is not really something she can do now. It would be really nice for her if she could take advantage of the movie channels that are available. I’m going to try getting her a DVD player if I can find one that seems extremely simple to operate. That, at least, might be something she could enjoy.

So, my resolution is to be able to use whatever information and communication technology is readily available in most homes at such time as I get to the point of being unable to get out in the world at will. You can’t control everything. You might not be able to help being dependent on others for transportation maybe other things as well, but I resolve to be able to keep myself amused and engaged as long as possible. And I’m kind of looking forward to having more time for blogging, or whatever it is we’ll be doing by then.

I haven’t been posting as much, lately, and I really thank the people who have been following my “stuff” and have checked in. My routine now is pretty much this: go in for treatment, come right home unless there’s a blood test or appointment, have lunch, sit like a lump for several hours. Radiation fatigue is cumulative and I’m accumulating it. Even my brain goes on strike for a few hours. I don’t think the heat and humidity is helping a lot. Tomorrow is the last treatment, though, at least for now. I’m hoping to get my energy back at least to the rather unimpressive level it’s normally at. I’m no dynamo, but it should get better than this. Of course, a lot depends on how I take to whatever the maintenance program turns out to be. I’m hoping that whatever it is, I can work around it.

Originally they said it would be twenty treatments and now it’s reduced to eighteen. Other people who share the waiting room are congratulating me on getting through early. I find I’m not as excited as they are, although I’m happy to be done. For one thing, aside from the fatigue, it hasn’t been that bad. The whole staff is incredible in the way that they make each patient feel comfortable and cared for. The radiation itself doesn’t have any discomfort connected with it. Now that it’s over, though, I’m integrating the fact that it’s only radiation that’s over. The doctor kind of brought that home in the last examination. Of course, you go in for a follow up. I have an appointment for late next month. He casually said that they’d evaluate whether I’d need more radiation at that point. I’m thinking, “Whoa! I’ll be back at work by then. I have this life and these obligations. When my time-out is over, it’s over.” Only it’s not up to me anymore. The other thing he said that didn’t cheer me up was that it was good that they were able to keep it to eighteen sessions because that would make it less problematic if I ever had to have the Total Skin Electron Beam Therapy. OK, I knew that was something that was held in reserve, but in my mind it was no longer a consideration at all.

We’re a sorry lot right now. My daughter said she’s tired of being pregnant. She wishes the baby was ready to be born. It’s a normal enough way to feel in the last few weeks. The thing is, she’s in the first trimester. That’s the sleepy trimester, though, so it’s understandable. You always feel like a nap would be a great thing. My daughter is used to a high energy kind of life, running from one activity to another. Now, she’s got about an ounce worth of baby who’s using up the limited supply of oxygen in midsummer air and she’s got a good sized catalog to finish, her steady freelance work and her eleven year old daughter home from school. She’s used to being equal to it all and now she’s not. I know how she feels.

My mother’s transition remains the toughest, though. I see where this is going and it’s no place good. She’s bored, and eventually that might mean bored to death in the literal sense. For much of the last year my daughter took her places whenever she could. Now she can’t, at least not nearly as much. That’s not really a temporary situation. When the catalog is done and work slows down, there’ll just be a small window of time before there’s a baby. She still thinks of herself as having lots of friends. She doesn’t. She has two who are mobile and they’re in their eighties, just as she is. Most of the others have either moved away or moved into a stage of life where they can’t be responsible for a contemporary who needs assistance at every step. She doesn’t really realize that about her condition. She offers to come along to the doctor to help me and occasionally still floats the idea of driving, if only down to the store. She forgets that someone has to get her in and out of the seatbelt, open and close the car door and help her in and out of the car and the house as well. In her mind, she’s still able to breeze in and out. When we realized we had to insist she stop driving we envisioned putting aside some money for cabs, so she could still have some freedom. As it turns out, that’s out of the question. She needs too much physical help and has too little memory to be going anywhere on her own, even in a cab.

We tried a senior citizens’s group and she did try, but she really didn’t like it. I don’t think she has enough short term memory to make new friends. She can’t remember anything she’s told, so how’s she going to get acquainted with someone new? On the other hand, we checked out social model adult daycare and she’s not ready for that either. We haven’t got any answers and are just taking this a day at a time for the moment.

I know all this sounds like a lot of gloom. We’re really not gloomy. We’re going along pretty well. We’re just working on getting our minds around these ever-changing situations. I somehow thought that middle age would be a more settled time than youth. It isn’t, at least for us. I realize now that life is just one continuous transition.

Yesterday went downhill fast, or so it seemed. Tuesday’s the day to meet with the radiologist/oncologist so he can see how I’m doing. Once again, he was less than pleased. He felt that the “big thing”, which is a tumor-like mass of tissue on what was once my waist hadn’t shrunk. At about the halfway mark, that wasn’t good. Now it had shrunk in diameter, but I could see it didn’t look like something that was halfway gone. He said maybe they’d have to add more sessions of radiation and I should talk to the dermatologist about other treatments for it. A few extra radiation sessions certainly wouldn’t be the end of the world, but I was just generally bummed about the whole idea that maybe the radiation wasn’t working. In addition to that, two new spots popped up over the weekend, just outside the area of radiation. I hit them with cortisone cream as soon at they appeared and they’ve retreated considerably but it’s another thing to take up with the dermatologist. Good thing I’m seeing him tomorrow.

After treatment it was bloodwork day, so I went off and got that done, and then sort of limped home. To find the basement under water. We’d just been deciding whether to save up a bit and replace our thirty-something year old septic system or just to have it cleaned out thoroughly. The cleaning would cost at least a quarter of what replacement would cost, so it wasn’t a no brainer, even though we didn’t have the money to replace everything at hand. Until yesterday. After some phone consultations with other family members, we arranged for cleaning. No time for saving, or to have someone start a replacement job.

At dinner, my mother looked up and, appropos of nothing, asked, “Have I been going to work?” and then, “I’m confused. Do I still work?” Not in years and years. That’s one of those uh-oh moments. It’s qualitatively different from asking me a few times daily if I’m going to work today, and having me explain, each time, that I’m home for several weeks. Those are the short term memory issues. Remembering her own retirement is another kettle of braincells altogether.

Later on I noticed that the “big thing” that the doctor was unhappy with had changed color. It was distinctly darker and redder than earlier in the day. That doesn’t sound so good, but it seemed to mean it had ratcheted up its response to radiation, so I was not unhappy to see it. This morning, I got up and it had shrunk by a visible percentage overnight, as if in response to the doctor’s disapproval.

Now it’s time to see what today might hold.

Just last week my mother passed a mental acuity test at her doctor’s office with flying colors. My sister took her. Said she remembered everything…short term stuff, long term. Was witty as all hell. As soon as she got home, she couldn’t recall what day it was no matter how hard she tried. That had to be something to do with adrenalin or something. It has to be more than just the “good days, bad days” syndrome.

It hasn’t all been mental acuity, though. We just had to unravel her finances and deal with the fact that she can’t even handle the day to day petty cash without help.

Tonight at home, not so good at all. During dinner she asked me what appointments I had this week. I told her about the two that I had. We discussed them. About five minutes later, she asked me what appointments I had this week. We did that three times. That’s not counting the identical conversation we had once or twice earlier in the evening.

What was really sad came later, though. My sister and I were talking about Tom, someone who we both know, but she knows better because she’s worked with him for many years. I’ve worked at the same place for two and a half years. My mother knows him, too. She knows most people my sister works with because my sister has been at the same place for eighteen years. She couldn’t figure out where I would have seen Tom, though. What was sad was the deer in the headlights look on her face when she realized she was missing a piece of the puzzle that she should really have. We explained and calmed her down, but she was kind of freaked. About a half hour later she was heading for the front door, which was worrisome. It seems that she couldn’t remember what house we live in and wanted to have a look from outside.

It’s gotten to the point where she has internalized the fact that she forgets things, and even manages a kind of haughty aplomb about it if someone seems to expect too much in the way of memory. But up to now it’s been all short term things and this was a little different and she knew it. Tomorrow could be a good day, of course. I hope it is.

My mother lost it last night. She could not remember what she’d done today and she fully realized that she couldn’t remember. She’d done quite a lot as it turned out. She lost the day for a while. She cried and threw her handbag clear across the room. I can’t tell you how out of character the latter is for her. It wasn’t hard to understand. It was a matter of a moment of clarity colliding with her more usual confusion. Sometimes she drives me right up the wall, but on this, I could only sympathize.

I don’t know how you come to terms with the idea that your mind might be going. She’s done better with it than I ever would have imagined. She’s given up her financial independence, her car and her personal dignity to a large degree. She’s done it with as much grace as a chronically confused person could. But once in a while, when it comes home so clearly, weeping and throwing things seems appropriate.

I lost a day once. It was truly terrifying for a while. What I think happened is still only a theory. It was never definitively explained. I’d gone into the city with my sister. We met friends, went to a restaurant and met up with more people, had a nice brunch and then most of us went further uptown to the Museum of the City of New York to see a traveling exhibit about Woody Guthrie.

I’m still not clear on some details, but I gather that my sister and I headed back to Penn Station and didn’t have supper in the city. We stopped at Smoothie King in the station and I got some kind of coffee flavored type of thing. What I’ve learned since then, but didn’t know at the time, is that coffee extract doesn’t agree with me. At all. I started to get some stomach cramps on the train and when we got home, apparently I parted with most of my bodily fluids. I don’t know how to put that nicely.

At some point, someone asked me about the day we’d spent. That was when I noticed I didn’t remember anything about the whole day. Nothing. It was a blank. Amnesia, just like on soap operas, except that only the one day was missing. Some, probably my husband called my sister to come down. She still lived in the upstairs apartment at that time. The first thing I remember about that was her saying, “Remember, you started to get sick on the train.” And to that I said, “Train? We were on a train?” She went on to say we’d been in the city, and gave a synopsis of the day. I didn’t remember any of it. Nothing. Nada. At that point I started to kind of panic. The rest of the night is still not clear. I know that we went to the emergency room and the tests they did didn’t turn up anything. Gradually the memory of the day started to come back and as that came back, the time when I couldn’t remember became fuzzier. For the next couple of weeks my focus and short term memory were definitely impaired. I could function and work but it took more effort to focus even on every day things. I never found out why it happened, but since it never recurred I finally concluded that it must have been a result of sudden electrolyte loss or something similar.

It was the most bizarre experience of my life. To have that become your every day reality must be truly terrible. To realize it’s happening with clarity would be unsupportable.

Things seem to be a little better with my mother, at least for the moment. Good days and bad days are par for the course with dementia, but it’s been a kind of steady improvement since we took over keeping track of her medication. The orignal episodes seem to have done enough damage so that she wasn’t as precise about it as she used to be, but we didn’t realize it for quite some time.

We’re still working on straightening out her finances. Things have improved to the point where she can discuss them clearly, but not to the point where she can handle them without help.

One problem that’s not going to get resolved quickly is just a matter of different strokes for different folks. She was always very social. When my father was alive every weekend would bring dinner guests, or else they’d be out being the guests. Sometimes it got to be a bit much for him and he grumbled, but he generally went along with it. After he died she made some adjustments to the who and where of her social life, but continued at the same pace. Most of her life was very busy. Her second career was teaching and she went to school to finish her certification, raised the family, which included her own mother, and worked all at once. After she retired, she and my father had an antiques business ready to go. When he died, we all went into the used record and book business. When that run was over, she went to work in a book store. The day finally came when working was no longer an option and then it was volunteer work and there were still plenty of friends. She’s never, in her entire life, spent much time at home.

I’m not that way at all. I’m very happy being home. If I didn’t have to work, I wouldn’t, at least not somewhere I had to show up every day. In my mind, one of the best things about living with so much of your family is that you don’t have to visit each other. You can sit down and have a cup of coffee together whenever you want, but there’s no need to make a whole day kind of big deal about it.

I love seeing my friends, too, but the fact that most of them live hundreds of miles away suits me fine. We see each other a few times a year. It involves a road trip, which is one of my favorite things, and a couple of days of getting away from it all. It’s more often at someone else’s home than ours. Only an intrepid few want to deal with getting to Long Island. Then it’s back to reality and I find that busy enough for me. Too busy, actually. A quiet evening at home is my idea of entertainment. A little time alone would be nirvana, but it’s not an option. As for my husband..well, I’m a social butterfly compared to him, so you get the idea.

It’s been a week from hell at work and we’re dealing with going up to New Haven to the lymphoma clinic on Tuesday. That involved a couple of very early morning appointments for tests and a consultation with the doctor. My husband has diabetes with bad neuropathy, which makes everything an effort. As icing on the cake he has one kidney. He works fulltime and is now a little stressed about my health, even though that should be fine. We’re really tired. The three day weekend was even more welcome than it normally would and we didn’t want to do anything aside from stretching out the weekends errands and chores a bit. Mom was up and asking what our plans were for it early this morning. Were we going to barbecue? No? Why not? Well, we never have before, so I don’t know exactly why she’d assume we were starting now.

Don’t be thinking that we’re keeping her trapped in the house. She gets out almost every day. It’s just that “almost” was never enough and it still isn’t. This is the reason why so many marriages don’t work out. Differences are fine when you can each go your separate ways and come together where and when you want to. It’s when everything one partner does affects the other that the trouble starts. This isn’t so different. Now that she’s not driving, or really able to be alone in many settings, the differences in our basic personalities are going to rear their ugly heads. We all expect to give a little, but you can only stretch yourself so thin before you snap.

For today we settled for lunch out and I took her to the library, went and did my grocery shopping, and then picked her up again. It doesn’t sound like much, but even though she wants a lot of plans, she’s really not up to much more than that at once. Tomorrow one of us will drive her to church, something she only took up again a few years ago after a forty-something year absence from organized religion. With any luck, she’ll have lunch with a friend from church who drives her home. Monday…Monday could be a problem.

It’s a small thing, but I think we’ve gotten over a hump. Not the only, last or biggest one, but hey, we’ll take it. My mother seems to have internalized the not driving thing and accepted it as the right thing. That’s good news for us, but even better news for her. Her life has become limited in more than just the geographical sense, but it doesn’t have to be over. If she can stop being miserable about what isn’t, she’s free to enjoy what is.

Today was a little less frenetic (and less expensive) than the days she spent last week, but she seemed to find it good. My daughter made her lunch at home and my son joined them. Then my daughter hit on the idea of dropping her grandmother at the library while she went and did her other errands. That gave my mother just about the right amount of time to browse and I’m sure it felt more like the old days when she was getting around by herself. We’re all figuring this out as we go along.

We got some information about activities at the local senior center. There’s a chair exercise class sound promising. Then there’s a club where they basically have lunch and plan bus trips. She’ll have to see what type of trips they are. If they’re the Atlantic City variety, she wouldn’t be interested and couldn’t do it anyway. If there are theater trips with plenty of assistance, that would work. The main thing is, she’s willing to investigate.

So, after a flurry of phone calls we determined that my cousin is indeed coming from Connecticut and she’s taking her mother and mine out to lunch. It took a little doing because first we talked to her son who thought she was on Long Island yesterday. Teenagers are not a lot more reliable sources of information than memory challenged elders.

My mother herself told me alternately that my cousin was coming yesterday, today, maybe not at all, having lunch here and that she, my mother, was taking the group to lunch. At one point she told me she’d “gotten a message” from my aunt about it. I asked her where she got the message. She said probably her answering machine. That was unlikely because she doesn’t have one and we’d just discussed the fact that her voicemail isn’t currently set up. I told her we’d set it up, but thinking about the kind of confusion that’s going to arise when people are leaving her messages and she’s retrieving them, not retrieving them or deleting them unheard is daunting. She wasn’t exactly great with technology before her mind started to go. She was an early adopter when it came to home voicemail, but that was because she couldn’t manage an answering machine.

We also determined that my mother went through something like $400 last week, getting one family member after another to bring her to the bank for withdrawals almost every day. It seems to have been spent largely on going to lunch. That won’t do. She can’t afford that and we’ll have to figure a way to wrest even her every day finances from her. It’s all been too sudden to have our ducks in a row in advance. We’re putting out fires as they ignite.

All of this gave me the name for a post category I was looking for. I wanted one just for the posts relating to dementia, since that’s become a major theme of life here at home. It’s with no disrespect intended that I’m choosing “Out to Lunch” for that purpose. It seems that, at least in my mother’s case, it applies perfectly.