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]

Sunday, June 22, 2008
 
My hardened attitude seems to be substituting for sleep...
...for which I am grateful. I decided, after my visit this morning, which lasted until about 1300, that I would go back this afternoon, as usual, after Mom's nap and just before dinner. First of all, it seems that someone forgot to attach the bed monitor last night and Mom almost fell out of bed adjusting herself into a comfortable position. Secondly, some minutes after I arrived this morning to my mother huffing and puffing to breathe I discovered, in a roundabout way which involved me thinking that the concentrator wasn't working, that several coils of her oxygen tubing were smashed underneath one of the bed legs; not the first time this has happened. I have no idea how long they were like that.
    I not only corrected the second problem, I attached a note headed "DO NOT REMOVE" to the bed rails addressing this concern; although well over a week ago I attached a note to the concentrator about the same issue. It'll be interesting to see how long it takes for someone to remove it. Regarding the first, that's my main reason for showing up tonight: To make sure the CNA on Evening Duty is asked to attach the bed monitor to my mother after she settles into a comfortable position for sleep.
    The toilet, as well, was, once again (for at least the third time), clogged, who knows for how long before Mom and I discovered it. You'd think they'd outfit these places with those toilets advertised as being able to flush everything. Once the staff was alerted it took a few hours for it to be addressed because, somehow, the information about which room had the problem was mangled. I left as someone was entering the bathroom with a plunger. I suspect I know why it was clogged. Yesterday one of the CNAs accidentally flushed a small tube of barrier cream down the toilet. I thought that had been handled. I guess not.
    My mother's tasty, "carb controlled" lunch included an off-the-rack "whole wheat" roll (as usual), some sort of potato concoction (as usual) and a chocolate eclair; as well as about three ounces (maybe) of roast beef. I swear, I wish I was on a "carb controlled" diet! The nutritionist for the facility could make a mint by publishing this spectacular diet; talk about "...and I loved everything on the menus..." advertising tag lines! Breakfast was a thick waffle with sugar free syrup (as though this type of syrup is somehow going to ameliorate the white flour in the waffle) and sausage. Can't wait to see what CC delights are served for my mother's dinner. We're just lucky that my mother's diabetes remains uncritical.
    My mother did mention to me, today, as we labored (truly) our way through a game of Sorry, that she feels "something isn't quite right, yet." She's right. I can tell she is still fighting "something"; the veil of haziness is obvious and it's to her credit that she's recognizing it. I'm hoping it's a UTI, as that will be addressed. If it's not, it won't be addressed and I doubt it will be investigated, as it's pretty much mutually decided that this will be my mother's last week. So, we'll address it at home, if necessary, under the auspices of Hospice.
    Omigod, it's almost over. That, in itself, seems to be flooding me with the energy I'm going to need to face this next week. If I don't get everything in the house addressed before Hospice kicks in and checks us out, well, fuck it, we'll work on it after the fact.
    I'm still scared about how I'm going to manage Mom, here at home, but, damn, we've been through so much in the last 11 years, I know we'll get through this.
    Last thought: Did I mention, I'm beginning to wonder if Mom really has lung cancer? It's not that I'm in denial. Believe me, I've been expecting her to kick the bucket for a long time (what, exactly, are the origins of that phrase, anyway) and have often wondered why she didn't develop lung cancer earlier. I'm amazed she's still here, although grateful, too. Perhaps I shouldn't be saying this too loud, as, if she doesn't have lung cancer, terminal life wouldn't qualify her for Hospice (although she'd probably qualify, finally, for Home Health Care, which would allow her many of the same benefits as does Hospice). But, you know, this is just uncanny. You'd think, by now, according to the diagnosis, the assumptions of how long it's been with us and the prognosis, that something definitively cancer-like would be happening. But, then, I recall reading, maybe in the How We Die book, that cancer can be notoriously unpredictable. Wouldn't it be funny, though, if this was yet another one of YRMC Hospital's misdiagnoses? I've lately had imaginings of us, a year or so down the road, pretty much trampling our path in exactly the same way we have for the last more than a few years, surrounded by Hospice people who are muttering, "When is this woman going to enter the dying phase???"
    Who knows...maybe the woman is right...maybe she is immortal. May the gods help us if this is true.
    Back to the mines.
    Later.
Comments:
I believe 'kick the bucket' came from back in the days of hangings--you stood on a bucket, noose around neck, and someone kicked it out from under you...I have been meaning to write you for awhile and promise I will soon! As far as facilities go: THE GRASS IS BROWN EVERYWHERE!! Even the good ones have their warts, and the bad ones, well--we won't go there...
 
Cancer manifests in many ways. As you mom's life has been unique, so will her cancer be. It's like living in a new symphony-- you can't write it, you can't conduct it, but you can learn to dance to it.

My mother died of brain tumours and she was walking, talking, and managing most of the house (as well as caring for my father) until one day she literally fell into a coma and died 6 days later. We had no idea she had cancer (although we noticed other problems, that in retrospect make perfect sense).

I suspect that you'll both do well at home.

Strength for the journey. Strength for the dance.
 
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