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.
...the worm in the apple...isn't there some saying about worms and apples?
When I awoke Mom today, although no harder to awaken than usual, once she was upright she volunteered that she didn't "feel good". Despite my pointed questions, she couldn't identify specifics. It's unusual for my mother to say this, even when all her stats are indicating that she probably shouldn't feel good, so I always take this seriously. I thought that she might revive an hour or so after the one dose of iron she's now allowed daily. I didn't mention anything to her, though, forced myself not to constantly ask her how she felt "now" and tried hard to only obliquely observe her lips and fingernails. She didn't seem any weaker than usual, just, well, not as sprightly. Maybe, I thought, it's all the exercise in which she indulged yesterday, which usually happens on a trip to see the doctor. She's a proud woman who likes to show off for an audience and she certainly did that yesterday. Maybe it's the low going through. We got a little rain while we bathed her. Maybe, too, I speculated, breakfast, a little conversation and reading will revive her.
Maybe they did, but by the time she was beginning to think of napping I was noticing that her lips were whitening and her breathing was a touch harder than it has been in the last week or so since her cold has abated.
I'd been telling myself, in response to her complaint, that I'd give the new course of treatment 48 hours and not call the doctor about increasing her iron supplements until tomorrow afternoon, but I was on the phone at 1530, briefly describing my observations and asking if I could "please" increase her iron dosage. I suggested "two to three a day". He settled on two.
I understand what he's doing and I told him this, although I didn't go into detail. My belief is that he's attempting to determine how well erythropoetin will work, whether she'll need iron supplements during the treatment, if so, what type, and, probably, whether she'll continue to need occasional transfusions. I want him to know that I have taken a position of trust in his methodology...and, after this morning, also want him to know that he can rely on my observations and reports while Mom's in this trial period.
I also discussed a possible life-style change with my mother at breakfast: Perhaps we need to cut back on her night sleep by a couple of hours and make sure she gets three full meals a day, all of which will include some sort of iron source. Her response? A generous, "That's an idea, I never thought of that." This, of course, is dependent on her energy reviving a little so that I can actually get her up and she isn't so tired that she dissolves into rag-doll status, which presents an alternate danger, since it doesn't keep her from moving but it keeps her from moving safely.
"Secretly", I'm terrified that I will somehow offend yet another doctor and jeopardize yet another of my mother's treatment avenues. I've no indication of this and I want to look on the bright side, I want to continue to "float", but...
...well, let me put it this way. I just broke my vow not to touch research for a while and spent some moments googling erythropoetin therapy. Luckily, there's nothing new that I hadn't read some time ago. I've never been sure that she's a good candidate for this therapy, since her native erythropoetin levels have never been below normal and still aren't. My guess is that her hematologist probably feels the same way. She doesn't have cancer, at least not as far as we know and not at the moment, so there appears to be no danger of the epo shots stimulating a tumor. Her renal function is better than usual for typical instances of epo use due to renal failure, but it's not great, so, theoretically, she qualifies as an "other uses" candidate. And, anyway, who knows, it could be that her anemia is due to a multiplicity of chronic diseases, as well as some occult internal bleeding from time to time that will never be found. Seems, as well, it's not uncommon for epo therapy to be combined with iron supplementation, often intravenous iron boosters. I even read something about instances of alternating epo therapy with transfusions.
Then, after about a half hour of this, I burst into tears. Can't tell you why...maybe it's partly exhaustion, maybe it's partly confusion, maybe it's just that I'm alone in all the consideration this involves and that's beginning to get to me. Could even be disappointment, despite my determination to have no expectations.
I still don't sense that The Grim Reaper is calling Mom. Neither does she, but she may never hear the call...she may simply be overwhelmed by the scythe. It isn't her nature to anticipate death, hers or anyone else's. Thus, if she isn't anticipating death, neither will I on her behalf.
But, you know, maybe we'll have a more felicitous evening. At least we started the book, and she's thrilled with it but could only endure listening to the first chapter before she opted for a nap. Her initial up time wasn't any shorter than usual today...that's a good sign.
So. An iron pill in the morning and one at night. Maybe I'll awaken her two hours earlier tomorrow and we'll begin that experiment, as well. Tonight we're having burgers, full of iron. I've got a can of spinach left, too, and she loves canned spinach with vinegar, although, contrary to popular belief, vegetable sources of iron aren't nearly as useful to the body as meat. Funny, one of the minor clinicians at the doctor's office, yesterday, waylaid and lectured me about how feeding Mom lots of spinach would rid her of the need for iron supplements. I nodded and made a mental note to try to avoid this woman during future visits.
Another day, another apple, another worm...
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson