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.
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