on three walks a day.....

So yesterday, along the lines of still alice and making the present memorable, we went for three walks. It was her fault, really, but it made her soooo happy to see buddy standing there, wagging his tail, and it opened up the opportunity for long walks together as i teased her about making me come- it was delightful. The dog didn't suffer, exercise is good fo both of us, it was just great.

Then, that evening, before the third walk, she started playing baseball with the triplets next door. See, in her former life, she and my daddy coached little league. It was a huge part of their lives for about twelve years- when he died unexpectedly the little league association retired the team. They were good at it, and for years mom continued to attend the games "her kids" played in, until they all began to graduate and did not play locally so much anymore. To watch her, then, pitching (with surprising accuracy) to a little league child again, it did us both so much good. She is still my mom, the person she was. She is not walking dementia. She is who she always was; it's just a little bit harder for that woman to reach out and connect with the world, and for the world to connect to her.

Part-way through the walk, we noticed that some of the younger kids we had just been playing with had had their kickball game taken over by the town's teenage "miscreants". These were kids who had been yelling out to mom all day, the kids she had in in-school suspension. i wasn't sure if they were making fun of her, or would treat her well, various kids had done both in the past. She's come down the stairs whispering about our first walk of today just now, so i'll have to finish this story later. :OD.

ain't life a mystery.....

It is much too late. It's 3:20 pm, and i've been reading for quite a while. The tears run down my face, and salt streaks have frozen and made it feel sticky. This is the sign of a good book. It is not the sign of a productive day, one i meant to spend cleaning, and calling to get out the money we need, and doing chores. i find myself not really feeling guilty, however.

i just finished "still alice" by lisa genova. i'd recommend this book to anyone, but it has special meaning for those of us touched by alzheimers, and those of us who know that there is a very real chance we may someday have it.

The book made me really consider this latter possibility, but it was in my mind from the House on Beartown Road as well. Like Ms. Cohen, i sometimes catch myself testing my memory, searching for break and blips which should cause concern. When you spend your time with the memory impaired, sometimes you almost become brought into their world. At times i need to stop and think of what day it is when mom asks. This is partially a result of not working, and partially, i think, the result of spending my time in her flux, an area where the day matters only in an inconsequential way, and what is now is what is vital.

Alzheimers is genetic. My grandpa had it, my mom has it (or some form of progressive dementia), and "alice" cites genetic markers that are associated with at least the early onset type. Children have a 50% chance of inheriting these markers, and people with them will get the disease. Part of me is frightened by this, but part of me is not. i may not live until my older years, though Lord willing i will. The job, at any age, is to live life the best you can, such that you would not have any regrets, and you try to please God.

The book also talks about people who are very intelligent being more likely to contract it, as if they use so much earlier in life that their brains are simply tired later. At times, this almost makes me scared, almost makes me, in irrational spurts, think it would be better to be less smart. This isn't something i truly feel or hope, however, merely something my mind formulates as a jerking smasmodic terror reaction and i pray that Lord willing this would not happen that my abilities and capabilities remain and i thank God for them.

Basically, i'm just being honest in this post. Sorry for the rambling nature. Sorry for the irrational nature. If i'm doing this, however, as an honest glimpse into what my life is like now, it is important that i write such tings down even if they are nonsensical. May nothing, Lord willing, bad come of them. Thank Him for everything!!!!! Perhaps the best thing i received from this book, the most worthwhile, is contemplation on keeping mom where she is. In the book alice, the main character, wants to remain in cambridge. When she is taken elsewhere, even to her vacation home in one scene, she is agitated, and wants to return. i struggle so with the decision to either take mom somewhere where she can get better care, or leave her here in familiar surroundings. She does not want to go, however, she has told me so. A few years ago, when the flood was threatening our home, and others were evacuating, she refused to leave. This is her home. How can i presume that i know best, and take her from what she knows????? Another great lesson from the book is when alice is talking of her own experiences as someone with the disease. She asks those present to look her in the eye and remember that she still can make decisions, that she is still herself. She also points out that the past is foggy, and the future uncertain, but she can live in the present. Let's all make the present as pleasant as possible, whether it will be remembered or not, okay?????

i'm just a girl in the world.........

On mopping in the nude:
The other day i joked to a friend, whilst discussing the drinking of wine and how long it had been since i had done so, that i basically live the life of a middle aged housewife. (Telling this tale to a male friend a few days later, i added that i had the body of a middle aged housewife too. He was wise enough to act shocked and disagreeing.) Since that time, however, i have come to realize that, in some ways, this is true.

Take yesterday for instance. i awoke before seven, throwing on clothes and going to work out with my girlfriends before the rest of the house awakens. (A very middle aged housewife thing to do.) This time is such a blessing! It allows me to relieve some stress and feel good about myself, without worrying about where mom is, if the dog has been out, etc. (Thank God for all!!!!!!!!!) When i returned, as is my wont, i did my devotions. Thus, by the time mom is up, two of my largest commitments for the day have been taken care of, and distractions shan't keep them from being done. i then returned to sleep until almost noon. (Bad housewife, bad.) We went for lunch, i came home, mowed the lawn (discovered, i believe, wild strawberries!!!!!), chatted a bit with a friend (weeded the garden while doing so, because, you know, time on the phone is free time for work), and hung up mom's flags.

The flags were an interesting thing. (Aside from the fact that i had a chair completely collapse out from under me, sprawling full length sideways on the porch and, by the grace of God, not being hurt.) It occurred to me that i do so much to make mom happy, things she loves, when really, it is probably for my own good perhaps more than for hers. She loved those flags. Much of my childhood memories revolves around flags, hanging them, admiring them, etc., as well as the other lawn decorations. She probably doesn't even miss them most of the time. i think, however, that by hanging them, i am trying to hold onto her. By frantically pursuing the things that used to be key parts of her personality, i can force her to stay the same. She is not disappearing into dementia. She is still the woman who loves plants, and flags, and baseball. This notwithstanding, the flags did still make her happy. It is my hope that she will never truly lose the woman who was there. So perhaps my efforts aren't only selfish, they keep her there as well.

We're in the midst of a fight now, as i try to force her to do something i know she will want to do later. It is tiring, but so worth it when you see her smile. The other day we went to the fourth of July parade in the town where she used to instruct first grade. She was so happy, even an outside observer who knew her commented to me on what a good time she seemed to be having, when i later ran into him professionally. Tonight, i imagine, will be the same thing. Once at the church softball game she will be happy she went. It is just such a struggle sometimes to make her go.

Back, however, to my housewife life. After hanging flags i decided to shower before my meeting. This required emptying the bathtub into the toilet (currently the only thing in the bathroom that drains properly). Before getting into the shower, since the floor was all wet (it is difficult to do this task neatly and quickly), i decided to mop. Since the shower had water in it for so long, it smelled. As it was empty, i decided to clean it. So i sprayed floor cleaner (method all natural all floor one, i love it and highly recommend it) on the floor, mopped, and scrubbed out the tub and shower. This made me feel delightfully eccentric. Perhaps i am a housewife, the sort who figures that as long as the floor is wet, it might as well be cleaned. i am, however, a hippie eccentric housewife, and that is how i like it. Don't write me off as middle-aged June Cleaver material yet.

i went to work, another borough meeting, and came home to walk the dog with our friends. Then chores, hanging out with bubs, meds for mum (and half awake placebo dispension as well), and sleep.

Did i mention that being a middle aged housewife isn't really all that bad?????

Here comes another song about mexico.......

Life has spiraled into a somewhat comfortable rhythm. Spending a lot more time with mom is a good thing; i almost never leave her alone (she is now, but she is coming to the library soon, and is sitting happily in the car). It seems like every time i leave her alone (and at least once when i didn't) i get a call from someone that she's looking for me. Between this and the agency for the aging nonsense, i pretty much don't leave her alone.

It occurs to me how much caregiving for the elderly is akin to being a parent, but with some great differences. It is like parenting, in that you have to watch out for them and "mother" them. If i don't hand mom her toothbrush, she may not brush her teeth. If i don't force her to shower, she probably won't. If i don't monitor her medicine, she may not take it. If she "loses" me, she will wander around town, asking people, until she finds me. Sometimes i feel like her confidence and personality have become intertwined with me, like she has imprinted on me to a point. She uses my presence as an emotional boost, feeling more confident, more able to present a facade of normalcy. Sometimes it dries me crazy, like when she honks the horn to bring me back outside when i'm trying to relax or busy myself inside, or when, while cleaning, she simply must come in to see what i'm doing and beg me to amuse her.

i realize, though, that being a parent would be much, much, worse. i could not send a four year old outside for hours on end to do word puzzles. i couldn't leave a four year old at home in the car doing her puzzles. In some ways it is better to be a caregiver than a parent.

In some ways it is worse, at least never having been a parent i am convinced this is so. A woman with dementia is rarely, if ever, wrong. She is virtually impossible to argue with. In her mind what she is saying is the irrefutable truth. You can argue all you want, but she really did pay that bill last week. She isn't lying. It is like what has always been true for my eldest sister, who's delirium (for lack of a better term) has always come from mental illness not dementia. To her, it is every bit as true as the sky being blue is to us. If someone came to me and adamantly tried telling me that the sky was chartreuse, i would insist i knew what was going on. People with dementia, at least in my limited experience, seem to fill in the giant gaps in their memory with that which they decide must be true. This can be frustrating, but in reality, i suppose we ought to be thanking God for the coping mechanism. She is less miserable this way, i believe, as she does not see giant holes in her memory. She sees reality; it simply isn't the reality the rest of us know.

It might almost make one wonder if she weren't the one who truly knew things to be true. Sometimes this has been the case. Like the time when she asserted vehemently that the dog had been in her room, or the time she claimed she knew the man in the doctor's office, sometimes my doubts are unfounded. Bubs caught the dog jumping the barrier from upstairs one time when he doubled back quickly to check on something. We had simply been assuming she was "crazy".

Back to that rhythym- it is one of laziness, i'm afraid, but probably one full of time i will treasure some day. i justify my laziness as mom time sometimes, but i know that during the spaces when she is content, and lets me be, i am not nearly as productive as i ought to be. Were the agency on the aging to actually enter our house, i am certain i would be in trouble. It still desperatly needs to be cleaned. Lord willing i will spend my time more wisely.

For now, however, either we sleep in, or i awaken early to exercise with a friend. On the days where the latter occurs, i generally sneak back inside before mom has awakened, and do my devotions. It is a blessing, thank God for it, and for all!!!!!!!!! It is time to get two of my major committments done early, and before the day requires otherwise of me. It is my time alone (well with the undertaker, her mom, and God of course), it prepares me for the day ahead. It is amazing.

Mom in time comes downstairs, and we take buddy for a walk. This time is also a blessing, a gift from a benevolent Father. He gives me these trips around town in which she is happy, and young, and normal, and we chat, or i daydream, or we just walk- sometimes together, sometimes seperated by some distance, but generally together at least in theory. Then it is nearly lunch time, and we get food and her papers. i try to talk her into spending a decent chunk of time in the car doing her puzzles, while i clean, or weed, or work, or kill time inside. Sometimes i have more success at this than at other times.

At some point she gets stir crazy, and we go for ice cream, (we go nearly every day and i do not feel so guilty about this as she will eat it, and her weight at the last appointment was a slightly alarming 116 pounds), or check for games, or run some errand. At times we hang out at the library, or we run an errand i have, or i make up.

At night we often walk again, with friends of mine. She doesn't often walk with us at these times, but she walks at the same time. At times my friend's young daughter takes her in hand, literally, running to be with her, walking hand in hand and chatting. This is so good for her. Last night, after we dropped off the dog, we continued our journey and she walked hand in hand with one of my friends until we turned, and with the little girl the rest of the time. This was so sweet.

Other days she goes to work with me, sitting in the car while i do my meetings. Depending on her mood she may leave the car while i'm at work, and wander the halls of the school we're at. The janitors are usually wonderful to her, and i do not worry. Some might censure me for this, but really, what am i to do otherwise????? She enjoys being out, and, for the reasons aforementioned, i do not desire to leave her alone.

i try to remember, though at times i fail, to get her fed early enough that she will eat. There is some success to be had, however, in waiting until she goes upstairs and bringing her a yogurt, or a perogi, or something, and then sitting with her while she eats it. When my mood is as it should be, and hers is as well, we might watch tv together- it helps her relax before bed, and is bonding time. Too often, however, i become selfish, and go downstairs to do my own thing while she readies herself. i need to get her medicine to her before she falls asleep, or before i do at least, and then i go downstairs for bed. i lie in my chair, in my sleeping bag, once my nightime chores are done- the dog and cats are fed, dinner is eaten and the remainder left in the oven for bubs when he gets home- and watch television, read, or play on the computer. Quite often i watch scrubs, which show i've begun to love, until midnight, and talk with bubs some after he returns.

i go to sleep, and the cycle begins again. As i said, it's a nice rhythym, one i thank God for, though at times it feels dull and regular, housewifish.

A friend of mine recently wrote that her life was "not the one she ordered". This got me thinking. Mine isn't either, but i'm happy in it. Having mom with me is worth it, even despite frustrations. Thank You Lord for my life as it is. :OD.