Hi William,

Dementia is a term like "fever". It just describes a symptoms or a
cluster of symptoms, it is NOT a diagnosis. A person with dementia is
a person with confusion, cognitive impairment, memory loss etc. Those
symptoms are FROM something - whether its Alzheimer's or strokes or a
vitamen deficiency.

I wouldn't take the desire to stay with the boyfriend as a slight. You
know she's confused and has some kind of brain impairment. She's also
likely in a state of panic because her mind is going, and she's become
dependent on him.  You can't blame her for clinging to the last real
adult relationship in her life instead of turning to adult children.
The prospect of becoming dependent on your kids must be daunting - and
her reasoner is broken, so she can't think through various options and
the consequences in any rational manner.

Personally, I think you are doing the right thing. She has GOT to be
close to you guys because in the end, you will be the caregivers, and
you have to be physically nearby or it becomes an impossible task. Its
going to be hard enough on everyone, even if she's in the same town 5
minutes away. You also need a proper diagnosis, which means you have
to be able to talk to the doctors, know what tests have been done,
what specialists have been involved, and what they all think. You need
a prognosis so you are ready for what comes next with whatever is
going on.

It doesn't sound like plain garden variety Alzheimer's. These "spells"
she's having sound more like she's having small strokes, or has
something causing seizures - could be all kinds of things. It is
possible to have more than one underlyng disease or injury leading to
the cognitive impairment, but start with the premise that one thing is
the major contributor, and get the doctors working on finding out what
it is. There may be something that can be done, there may not, but you
need to know the story, and be ready for what comes next.

If you haven't done so, I'd also get yourself into a lawyer STAT who
specializes in estate planning, medicaid/medicare planning (including
the look back period), and get some advice. You need to understand how
to set her finances up to make them easy to manage, and preserve as
much capital as possible (and yes, its worth doing - the average
family who gets proper advice on this stuff saves 60K. Her ability to
sign papers is either going or gone, so get your skates on. I take it
you have powers of attorney for financial and personal care
decisions.

Don't fret the move. These things are almost always a one way slide
down the hill, so don't feel you will make her worse. She is going to
get worse whether she is 1000 miles away or 10. Better to be close by,
and know everything was being done for her that could be done, than be
half a continent away, and have it be an expensive struggle to know
what is going on - and also be totally shocked by the deterioration
every visit because you can't see her often enough. Shortly, she won't
know or care where she is, so make it convenient for yourself. Its sad
about the boyfriend, but he's not stepping up to look after her, so he
has to stand aside.

Incidentally TIAs are NOT innocent. They are caused by small strokes
or blockages, and every single one causes brain damage, even if you
can't see it (i.e. even if the sympoms seem transient and seem to go
away entirely after each one). The damage accumulates and causes a
progressive dementia called "multi-infarct" which is the second most
common cause after Alzheimer's.

This is going to be a tough time for all of you, but stay the course.
You do need her where you can look out for her best interest, and that
can't be done at a distance.

Mary G.

Hi!

I second everything Mary said.

The only thing to add is that your mom's little spells sound like something
medical happening combined with a panic/anxiety attack. I have had panic
attacks and they have included everything you listed except the blood
pressure spike. If she is feeling something odd medically, like a blood
pressure spike and TIA, she could be panicking because she can neither
control nor understand what is happening; nor control her emotions and stay
calm.

This loss over emotional control is common in dementias, but moreso in
dementias that affect the front of the brain more than the  rear of the
brain. A PET scan gives the best picture of what parts of the brain are
atrophying. Ask to have it part of a full geriatric neuro-psych evaluation.
Some doctor's may think that is overkill on an 86 year old with clear
dementia. But the medications for symptomatic control  of  dementias which
start in the back of the brain, like Alzheimer's, (some antipsychotics) can
actually worsen the symptoms for people whose dementia is primarily a
frontal lobe one.

And some dementias are due to reversible things like normal hydrocephalus
and B-12 deficiency. SO a full work up is a must.

Sorry you have joined this club

Wishing you and your family all good things!!

Adelle

What do you mean by 'bring her home'? Do you mean, to live with you? That is
a *hard* road to travel and often not possible to do practically, its
tremendously wearing on the carers. Can you provide 24x7 care at your house?

Sounds from what you have said she is declining rapidly,and  to look after
an Az sufferer , even as a couple, as many will attest here, can only be
done for a limited period of time before your health will start to suffer.
Its only when you have lived with it that you appreciate how difficult it
is.

Or do you mean, put her in a care home near you? If the latter, can you put
her in a care home near where she is so her bf can continue to visit?

Dear William,

Everyone here has given you excellent advice so far, Mary, Adelle and
Tumbleweed.   I can only concur with what they've said, and just wanted to
weigh in with that.

Good luck in your situation.   We have all been through it with various
loved ones, ourselves.

(snip)

Not sure what this last paragraph really means. One child will probably need
to be main caregiver with medical power of attorney and making most of the
final decisions since dealing with dementia issues can not be done easily by
commitee of kin or by their voting on every issue that will come up.

When my MIL with dementia still lived in an apartment she had a boyfriend.
Our LO with dementia really cared about her boyfriend who was older and knew
of her deficits. He could still drive when she could not. He lived about 800
miles from us.  We made arangements so he could come by Amtrak (sometimes
paying the ticket) and visit several times a year for a few weeks or months
at a time. This was good for the MIL and allowed us short breaks from 24/7
caregiving. We still had to check on them both daily but we were not there
24/7. Sure there were small problems - over the years he would dent the (her
old & unused) car and have other minor incidents from time to time but all
they had was each other and both seemed to really enjoy the company of the
other. They would go play bridge and always lose due to the MIL's memory
deficits but they still had fun and eagerly looked forward to bridge days.
The boyfriend, in our case, was generally a plus. If your mom's boyfriend is
a plus to the overall situation then he should be included in your mother's
future. As an example of what I was talking about not being able to work as
a commitee to provide care, my MIL's older daughter hated the boyfriend for
no good reason other than the fact that he was not her (dead) father so if
she had a vote the boyfriend would never have been included in the mother's
life at all and this would have been a big mistake.

You really need to get a complete medical evaluation done ASAP so you know
what you are dealing with. Your mom's situation will not improve on it's
own. There are numerous common and correctable causes of dementia so do not
assume she has AD. TIAs or temporal arteritis would be possible guesses from
me.

If you are sure she has dementia already, obtain and read the book The 36
Hour Day and give copies to your siblings.

http://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-Illnesses/dp/0446610410

This book is an essential tool for people dealing with people who have
dementia.

good luck,  AW

what everyone else said, including not having decisions by
committee.  whoever has the durable power of attorney for health
care and can make tough decisions needs to be the one in charge.
if someone else is better at wheedling the (probably overworked)
staff, then teamwork can work when you agree.

i second the consultation with an experienced elder care attorney
in your jurisdiction.  this is absolutely necessary unless she's
already indigent.

you are better off having her close to whoever is in charge of
her medical care.  i think you should consider having the
boyfriend come for a visit once she gets moved.

and most important, one of you needs to shepherd her through all
the geriatric neuro-psych tests necessary for an accurate
diagnosis.  

if she's continuing to have TIAs, mini-strokes, or seizures
(strokes or mini-strokes can cause ongoing epileptic seizures as
well as dementias), she needs to have an advocate who will
monitor and make sure that meds are given on time and that she
gets the appropriate level of care.  this is often a problem with
assisted living facilities, which, unlike nursing homes, may
expect patients to take meds without monitoring.  

as others have said, you need to have a full diagnosis because
different causes of dementias require quite different treatment,
medications, or palliative care.

and i'll echo again that you need to buy yourself and your
siblings "the 36 hour day" by mace & rabe, available in any major
bookstore.

welcome to the club that no one wants to join.  don't hesitate to
come and vent when you need to.

and remember, GUILT IS NOT ALLOWED.  whatever you do will be what
you have to do at the time you do it.  don't second guess or
guilt-trip yourself when you do it to keep her safe.