The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

Apologia for these journals:
    They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
    For an explanation of what these journals are about, click the link above.
    For internet sources that are about caring for relatives with moderate to severe
        Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
        links section to the right.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Friday, April 04, 2008
I've checked in on The Mom...
...with a bit more than my usual obsessiveness this morning and have decided to let her have her 12. She looks better than she did yesterday, although she began to look better yesterday evening before I gave her the second iron supplement. Maybe this epo stuff kicks in more slowly than I've been hoping. I didn't run across any specific mention of the typical trajectory of effects from injected erythropoetin. The information is probably "there", I either didn't notice it or didn't search far enough, or both. I wasn't emotionally prepared, yesterday, for my usual thorough searches. The only bit I have is this paraphrased comment from MPS's long stint as a kidney dialysis tech, taken from a fairly recent conversation we had when I was considering epo therapy in conjunction with the media-discussed dark side of the therapy: "Yeah. I remember when someone's hemoglobin was low, we'd shoot 'em and it would come right up. Scary." For some ridiculous reason I assumed that "come right up" indicated maybe a 12-24 hour improvement window...and, as well, indicated a rise of at least a couple of points. Thinking about it now, those assumptions wouldn't make sense in light of the administrative details.
    Last evening, though, after Mom's nap, she was able to further articulate what not feeling good meant. "I ache all over," she said.
    "A lot or a little?"
    "Oh, you know, enough to notice, but not enough to worry."
    Although I'd asked her, earlier in the day, if not feeling good felt muscular and she'd answered in the negative, I asked again.
    "That's it," she exclaimed.
    "Can you define 'all over', Mom? Is it really 'all over'?"
    "Well, my back," she moved her hand up and down her lower back, "and my legs."
    Ah ha. I'm sure it was a reaction to her walkering stunts on Wednesday and told her so. She didn't agree, but she didn't disagree. I took her temperature, just to make sure, and it was spot on, for her, anyway. That strengthened my case.
    "I'll tell you what," I said. How about I give you a full extra strength Tylenol (I usually give her half) with dinner (always with food, always) we'll forget about taking your blood sugar tonight and probably tomorrow (acetaminophen plays havoc with her blood sugar measurements), relax and enjoy the evening and we'll see how you feel later, and then tomorrow.
    Sounded like a good idea to her. About four hours later, when I was rubbing her legs down with lotion just before she retired, I asked her how she felt.
    "Oh, fine, just fine!" She was clearly surprised that I asked.
    "Better than earlier?"
    Her eyebrows rose. "What do you mean?" That's a good sign.
    "Well, Mom, most of today you've been saying you felt achy all over. Do you still feel that way?"
    "Well, no." She paused to reflect on her addled memory of past hours. "I feel good. I don't remember feeling 'achy'. Are you sure I said that?"
    "You know what? It doesn't matter. I'm glad you're feeling good, now. You almost look, in fact, like you don't need a second iron pill, but I'm going to give it to you anyway, just in case. We'll reevaluate a second iron pill a day tomorrow."
    "Oh, I don't think I'll need it tomorrow. I don't think I've ever needed those pills."
    Dementia-Lite. Gotta love it.

    Over the last few months I've been sleeping, occasionally, on the living room couch. It's not particularly comfortable. Each session involves more than a few wake-ups due to cramped arms or legs falling off the side. The living room is significantly warmer than I like for sleeping. When I sleep on the couch, I sleep in my clothes, which I never do when I "go to bed". Usually I end up in my own bed in the wee hours of the morning. I've been reckoning why I've been doing this, and haven't come up, yet, with a reliable answer, although I'm thinking that something about the living room makes me feel more protected than my bedroom and, I guess, lately, I've needed that sense of protection. Maybe it's more womb-like, or something, than my bedroom. Last night I again had a strong predilection for the couch. I decided, as usual, that I didn't want to unfold the damned thing (it's a futon disguised as a couch) because that involves rearranging the rest of the living room furniture, but, I surmised, maybe if I dress the couch with a bottom sheet, disrobe as usual, use a full length comforter and stack pillows on the head end in an attempt to ape my usual sleeping environment I might be more comfortable and sleep through the night. I remained on the couch for all my usual sleep hours, but was only slightly more comfortable. Instead of rousing several times, I roused only twice and was not cramped enough to rise and retreat to my usual bed.
    I mention this because I've been thinking that sleeping in the living room on the couch is a new, recent behavior for me. I noticed, though, while transferring 2006 posts into their own archive, that in the summer of 2006 I mention this sleeping arrangement. I didn't read far enough to discover whether I'd speculated on why I was doing this. I'm not sure it was for the same reason(s) I'm now doing it. I was awfully prolific with posting, that summer, at all hours of the day and night. As well, it looks as though that summer was "a good one" for Mom and me, which means probably wasn't harboring any ulterior anxiety. I'm certainly harboring ulterior anxiety at this time. When I sleep on the couch my earshot of Mom's bedroom is also about four times further than when I'm in my usual bed. I've calculated, though, that the depth of my sleep is at least four times less when I sleep on the couch and hope that these two measurements cancel one another out. So far as I know, my calculations haven't been tested; at least, I haven't awakened to Mom flailing on the floor after a disastrous attempt to perform a bathroom run in the middle of the night.
    I find it curious, though. Comfortable sleeping quarters are immensely important to me. I want my sleep to be shielded from everything but my internal physical and mental workings; and I want those to be well cushioned. I certainly don't forget, each night I decide for the couch rather than my bed, that I'm going to be uncomfortable and experience varying degrees of disturbed sleep, but I do it anyway, so the reward must be worth the trouble.
    I'd just like to be aware of the nature of the award.
    Going on 12 hours.
Interesting topic - sleep. I guess it's from having children, or from being in a big noisy family as a child, but I can sleep anywhere at any time on anything.

I've slept in airports, I've slept in lots of chairs in hospitals, I've slept on the floor in hospitals, too. I've slept in beautiful beds with crisp linens, I've slept in sleeping bags on a lawn chair.

I've never considered the idea of a comfortable womblike environment for sleep. My eyes just close, and then I'm awake.

No matter what is happening, no matter how good or how bad, we all fall asleep. Even when it's critical - like during a battle, or while guarding something precious - none of us can withstand the closing of the eyes, the stopping of the train. We go to dreamland, every single one of us.

I wonder why that is? Sleep really stops things for a number of hours. And none of us can resist it. I find that remarkable.

My father slept a lot in the last years of his life. Much like your mom, we would work to make him rise. I, personally, would have let him sleep, but it was my mother who insisted he be woken, bathed, shaved, and dressed for the day. I was perfectly fine putting him in plaid shorts with a stiped shirt. Who cared? What did it matter? My mother and my sister, his co-caregivers, would shake their head at the attire I would put him in. We each had our own style and it showed in my father's wardrobe combinations.

I think my mother was right in having him rise as she did. Not so much for what it did for him, but for what it did for us, as his caregivers. It kept us engaged and on our toes. Trust me, with Alzheimer's disease, it is MUCH easier to take care of a sleeping 200 pound man than it is to take care of a wandering, confused, challenging 200 pound man. Sleep was peaceful, waking was problematic. But with every hour he was awake, we reached him in some shape or form. We communicated on whatever level was presented for that day. It kept us sharp and observant. It made us active instead of passive. It helped us to learn about ourselves in ways sitting on a couch reading a book couldn't.

The question I constantly face, though, is what does one do with all this information, with all that was learned? It's completely unique and useless to someone who has, say, a 90-pound aged mother. It only seems to be pertinent to our own individual situations. Each of us, as caregivers, are so unique and different, and so our all of our parents.

I guess, I guess, I guess. I'm not so sure I'll ever know the why of what I've learned. I'm starting to accept that fact. But when it comes to Alzheimer's disease, I refuse to not fight it with all I've got. That much I did learn. And maybe my role is to wake people up to the crisis of this disease hitting the boomers. To shake them from sleep. To set alarms. It would be easier to roll over, but as my mother would say, come on, it's time to get up.
Gail, it's great that the Mom and Me Journals is up and running again. Patty's right that every situation is different, but maybe it's your systematic thought process and approach to caregiving that we can learn from.

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