Dealing with toilets
By M on Saturday 1 September 2007, 23:45 - Journal - Permalink
One of the most discouraging developments has been the breakdown of mum's
toilet behaviour.
Rachel was the first to notice that there had been a sudden deterioration.
There was more than one clue. There was a strong smell of urine around the
house. A bucket was being moved around. At one point a pair of dad's socks were
found in the bucket, soaking in urine. Mum was seen a couple of times looking a
bit lost and hitching up her skirts in the kitchen. It seems that she had been
urinating in the bucket - one that has for years been used as a garbage bin
under the sink. The reasons for this are hard to determine, since the toilet
can be seen from the kitchen. Moreover, mum and dad have now been in that house
for two decades (though to me it is still new, not home, and now never will
be). I would have thought that 20 years of repeated daily trips to the same
toilet would have reinforced and embedded the behaviour pretty deeply. Maybe it
did. Maybe the deterioration is just as deep.
So, one of the main criteria in determining what level of care people need,
along with the ability to feed and dress themselves, has broken down for mum.
The argument for keeping her at home in 'familiar surroundings' is also
breaking down.
Several times this last week we have found that mum has wet the bed at night.
There has been a raised level of care and support, with Rachel and Regan taking
away sheets and washing them. They also both bought waterproof under-sheets
which we have now fitted to the bed.
There was sufficient reason for me to take a longer stay at mum and dad's this
week - with the elevated need to watch mum, and a vet's appointment for Fluffy
which required that she not eat for several hours previously. I arrived on
Wednesday evening and hid all the cat food. Mum was already in bed. In the
morning I took the cat to the vet and waited for mum to get up. When she did I
went to check the bed. It stank - or something did - of urine, but it appeared
to be dry, I took the sheets off anyway, and changed them, but even the
mattress below also seemed dry, despite recent history.
We have a suspicion that this bed-wetting may be related to another urinary
tract infection, but the doctor was not disposed to examine mum or get tests
done. Instead, she simply prescribed a week-long course of antibiotics. Rachel
got the visiting nursing service to take on the administration of these
tablets, even though we, the family, would have been present for nearly every
day of the course. This entailed about an hour's worth of paperwork on
Thursday, already three days into the course of seven.
And there is more. At some stage on Thursday I went to the toilet and found
excrement smeared on the seat. I cleaned it, only to discover the same thing
later in the day.
There's no point asking mum about this, she doesn't understand, can't remember,
and can't say. There's no point asking dad about this. He denies everything and
blames it all on mum anyway.

Comments
Ahhh yes, incontinence changes everything. It's the first of the last straws when dealing with Alzheimer's. It comes as such a shock, like how COULD they not know to use the bathroom! But really, when you think about it, imagine the state of confusion they must be living with, to have not a clue how to perform a task they've been doing since as far back as they can remember.
They will most likely forget you, your smile, your touch, your connection to them. You'll be the only one with memory of them, who they are, what they were. They say Alzheimer's is our parents' disease. It's not. It's our disease. When our parents are diagnosed, the doctor should tell us, "Hey kid, you've got Alzheimer's." Every single task of our parents daily living will fall to someone else, and whether we are the caregiver or we assign the task to others, it falls directly and squarely in our labs. It is a long term disease, with perpetually diminishing skills, erasure of all memory, and death as the inevitable outcome. No one survives it, there's no way to get better. You have to wonder how long an entire generation of aging children will find that acceptable. It's not. It's simply not. Really, Alzheimer's is no great mystery, it's a disease, it has an organic cause, it follows a biological pattern, it does not defy the laws of science. It simply hasn't been paid attention to because the victims are perceived as being old and frail and not worth the effort, they're going to die anyway, right? When the disease shifts in the public's perception as a disease that pulverizes the young, not the old; when it's understood the victims are granted blessed amnesia while their kids fall asleep every night wondering how to possibly get through the next day; when we start demanding this disease be given the full attention of our researchers with significant increases in funding to get the job done, then, I think, we can say we did all we could.
I hated losing to this disease every day. There was, and is, nothing you can do to change its course, alter its outcome, or keep it from repeating in your family. I find that completely unacceptable.
Your mom and dad, having followed your blog for some time now, live in my imagination as two independent human beings with a real loving son who knows well the limitations being placed upon all the relationships in their lives. I thank you, from the bottom of my heart, for sharing your experience. It's been very important to me. My father died almost two years ago, but the eleven years of his being enveloped in the tar and syrup of beta-amyloid, left me a changed person.
Whether for the better or worse is insignificant. They say that people can't change - they will basically be who they are. I'll tell you though, I wasn't this person I am today thirteen years ago. I used to be patient, quiet, and very wrapped up in my own life, my own kids, my own husband, my own job. I didn't willingly give up my old life, it was tugged away, thread by thread by the choices I had to face every single day concerning Alzheimer's disease and my father's life. I became stubborn and insistent on one point - my father's care would be what he would have given me, had our roles been reversed.
Today, he's gone and I'm left standing in the skin of a person I don't completely recognize. I'm loud, aggressive, pointed and critical of any embracing of the status quo - be it scientific research, the treatment in nursing homes, the silence of our populations dealing with this disease. I wonder when it will pass, if it will pass, how much anger I have to burn up before I'll feel I've done all I can.
That said, The Unforgettable Fund website is being redesigned. I hope you'll stop in when it's finished and up and running.
Thank you for sharing your parents' story, even when you don't feel like it, don't enjoy it, and can find no good reason to have to continue writing. Believe me, your words have more power than you give them credit.
Patty
Mike, there's not much I can add after Patty's eloquence, but I wanted you to know that your careful chronicling is important - people need to know the not-so-pretty details.
Mona