On Aug 30, 8:33 pm, Carolina Songbird <carolinasongb...@gmail.com>
wrote:

Hi Songbird,

Hmmmm..... that was complicated.

My first thought was OMG whatEVER are we going to do?????   She was
living alone, fiercely independent, wanted to die in her house.    She
was over a hundred miles away from us and it was very hard for us to
come down there to get her treated for all the things she needed.
We were terrified she would poison herself eating bad food or leave
pots on the stove, or get lost going to the store a block away.   All
these were valid concerns with good evidence of their likelihood.

She had neglected her teeth, her medical appointments, needed to find
a new doctor in her health plan, needed a new hearing aid and new
bridgework.   She needed to be tested to find out exactly what she
had.   We needed to find out what the legal ramifications were.

So the first thing we did was get her established with the new doctor
in her plan in her area, then we made her an appointment and got tests
scheduled, and medication started.   This took several visits, each
one a big hassle to do.

Next we took her to the hearing aid doctor and got her a new hearing
aid.

Next we took her to the dentist and got her teeth fixed.  It involved
getting some bad ones out and a new bridge.   It was a real problem.

Everything was a slow process and a hassle.

She would take too many pills or not enough.   Pill boxes didn't
work.  She couldn't remember if she'd taken them or not and she'd take
another.

Her neighbor was looking after her for a while, but soon realized she
needed lots more than just looking in on.   She eventually called us
and told us to come get her.

Another friend who got multitudes of her phone calls, asking what time
it was, what day it was, etc. etc..... that lady died.

We then took her to live with us.... and of course got all the legal
stuff in order and the public health nurse to evaluate her and a new
doctor in our area, and meds to keep her on track, then daycare etc.
etc.

It took months to get this all in place.   It was all urgent.  We had
no idea what to do first, so we just made appointments and went full
speed ahead.

Evelyn

Hi Songbird,  You've been so helpful to me I'm happy to answer your
question.

When my Dad began to show signs of dimentia, nobody saw it but me.  He was
quite capable of being totally self sufficient and only bothered slightly by
the silly things he couldn't remember any more and a loss of some of his
dexterity.  He was getting clumsy.   I wondered how he was going to continue
to live alone.  I worried about him cooking, driving and remembering to lock
up at night.  In other words, his safety.  I guess somebody was looking out
for him during all of that because we've made it to the stage where he no
longer cooks or drives and he still knows to lock up.  I also hoped for a
slow progression and that's what has happened.   At least at this stage his
family, friends and neighbors all understand what is happening to him.
That's part of why he is still able to live alone.  He has a lot of people
watching out for him.  Most of them he doesn't remember who they are .....
oh well.

About all he can do now is care for his dog and feed the backyard birds.
That's his purpose in life.  He loves to go .... anywhere!  One of us will
take him out every single morning for breakfast and a drive in the country
and again in late afternoon.  Never dreamed we'd be spending so much on gas.
It's worth it.   He likes to get home in time to watch the Andy Griffith
show on TV.  He thinks it's a new show and that Andy and Barney are quite a
team.

Also, in the beginning my biggest fear other than his safety was that he
would no longer recognize who we were and that would break my heart.  Sort
of a selfish fear but I just couldn't imagine him "gone" in that way.   I
guess it still could happen but so far he's been able to hang on to those of
us closest to him.

I've told the story here before, but our first inkling there was
something not quite right with my mother in law came out of her Sunday
dinners. She was quite a good cook, and made very elaborate dinners,
which we routinely went to on Sundays. She'd have everything just
perfect - all the good china, cloth napkins, rolls and butter,
condiments, gravy, fancy vegetable dishes, home made dessert, a pot of
tea for after.

What I first noticed...and my husband did not, since he's kind of
oblivious on the domestic front ....was that her dinners started to
get a bit ragged. The table would not be quite so perfectly set, or
she'd have forgotten pie forks, or to put the mint sauce out.
Previously she'd had perfect timing in terms of preparation and
cooking - everything was ready to be served right on time like magic.
Suddenly, the meat would be overcooked but the veg or potatoe not
quite done. She'd forget the rolls, or the dessert. Or she'd have the
pie and forget the ice cream (and with her, if you had pie, you HAD to
have ice cream). She also started having trouble remembering what we'd
arranged. We'd have a conversation about how we'd be over at 4 pm on
Sunday, and she'd call four times more to reconfirm when we were
coming.

At the time, I was sure it was related to her Pernicious Anemia (which
I believe is now called Addison's Anemia). That is the form that is
caused by an autoimmune disorder, and prevents you from absorbing B12,
so you need B12 shots monthly. She'd had cataract surgery, and in the
aftermath, had not gone for her monthly shots for several months. When
I found out, I had looked up potential symptoms on the internet and
discovered that improperly or inadequately treated Pernicious Anemia
can cause memory problems. I was so convinced, I mentioned her
forgetfulness to our doctor (we happened to see the same doctor) when
I took her over for an appointment to make sure she got her shot.

He expressed doubt that she had a problem (he'd known her for years,
and at the time, she was quite together socially and in terms of
appearance), and then went into the office with her. He ran some
little memory and cognitive tests on her, and then came back out in
the hall and took me aside. His face was ashen - he was clearly
totally shocked. He showed me some of the drawings he had had her
make, of clock faces and little stick drawings she had to copy. It was
clear there was something HUGELY wrong with her that went far beyond
memory. Given a clock face with a 12 on it in the right spot and being
asked to write the rest of the numbers around the dial, she had
written 3,4,5,6 in a trailing line beside the 12. She couldn't put the
hands on a clock to indicate a specific time like 3 oclock (she wrote
00 beside the 3, and nothing more). Asked to copy a single drawing of
a house, she made a bunch of random straight lines. It was like the
ground went right out from under my feet.

Like everyone else, I was totally rocked by this idea. I had never
dealt with dementia first hand, and really didn't know what it meant.
I just had no clue at all what was going to happen. Given that my
husband was an only child, and we were the parents of two small kids
(a third arrived during her illness), I'm pretty sure part of my
reaction was an omigod, how WILL we manage this?

I'll include my advice to the families of the newly diagnosed in a
separate e-mail.

Mary