Hi KE,

It sounds to me as though you are dealing with the very worst stage of the
illness.   The beginning, where the person still has a lot of abilities, yet
you know something is very wrong, and they need some care.    The person
still wants to have autonomy and independence, yet they are not doing well
on their own.

I think the reason your grandma wants to go out so often is that she feels a
sense of loss of control in the kitchen and feels now that it is hard to
remember what must be done to store and cook food.   The same thing happened
with my mother in law when she was first developing the disease.

For all the years I knew her she was a good cook and always wanted to make a
beautiful home made meal for us whenever we visited, yet suddenly she wanted
to take us all out to a (very good) local Diner.   We didn't understand why
she was suddenly not up to cooking at home anymore, though we enjoyed the
Diner very much, it was so unlike her.   Also she began to become
lackadaisical with her personal cleanliness and her clothing.   She had
formerly been a very smart dresser and very fastidious with her grooming and
cleanliness etc.   The changes were strange, but worse was yet to come.

There are no magic answers.   You have to understand that now YOU are the
one in control.   You will have to just do things your way.   Buy food and
sneak it into the house if you have to.   But don't expect her to
understand.    She may argue, but you have to think for her as to what is
best, and you can't get hurt or angry when she doesn't understand.
Fortunately she won't remember being angry for long.

She will probably repeat things over and over, because alzheimers is an
illness that makes her short term memory disintegrate.   So hearing her say
the same thing over and over, or asking the same question over and over,
will be a routine you will become VERY familiar with as time goes on.

You say you love her, and that is the best thing.   Love will help you over
a lot of rough spots, but please realize that this illness is one that can
make her be very unreasonable at times, or difficult or even at times
violent.   I was very fortunate in that my mother in law never got violen,
but I have heard of others who have.

There is a book called "the 36 hour day" and you really should get a copy.
It is inexpensive and will help you a lot.  You need to know what to expect.

Please don't hesitate to come here whenever you have difficulty.   This
newsgroup has been a lifesaver for many of us!

There have been times when I sat here and posted with tears of frustration
running down my face, as well as times when poignant and tender moments just
had to be shared, so I shared them here.

Hang in there, and like I said, don't take things personally when she says
or does hurtful things.   She really can't quite reason anymore the way she
did before.   She can't help herself and she is finding the world and the
people in it, a strange place she no longer recognizes.   I know it is hard
to think that way, but so many of us have found the way, and you will too.

Hi Turtle,
Has she been diagnosed with AD or another dementia? That would be
the first step to find out what you are dealing with. There are
lots of people here that have and are dealing with different
types and can help you out. If she has been diagnosed it's going
to be a very long road for you and her. AD is usually a long slow
painful process. From the viewpoint of experience please don't
let it snare you as a victim too. You are only 36 and have to
have some life so please start thinking of ways to care for your
Grandmother that are less stressful for you. We can help you with
those decisions. I know you love her but you are already feeling
stressed out and there are lots of studies about the caregiver
suffering as much as the victim. Get the book "36 hour day" to
get a real feel about what AD is like. The cooking thing is
probably because she can't remember the process for putting
together a meal. It is complicated. Since it sounds like she
might be in early stage you might just give in and do the going
out/take out if you can afford it. Pick your battles, like those
that affect her health and well being. Try to place yourself in
her reality. That's very hard to do since having AD is
unimaginable and usually only comes with experience. When I first
started on this journey with my Mom I didn't believe anyone when
they told me what would probably happen. They were right and
acceptance was a long time coming. You might also want to try
"loving deceptions". To the rest of the world it's called lying
and very hard to do. Try different excuses why you should cook to
see what your Grandmother might accept. Like "it's my turn to
take care of you", "I have a new recipe I want to try" etc. Look
thru the link below my name and read True lies by Pam Pomo, it
might just give you a new perspective on things. I hope you post
back with other questions.

K E <Sillyturtle@webtv.net> is alleged to have said:

Maybe you gave up too much.  You need a support system around you
to be an effective caretaker.  Think of ways you can replace some of
these, if you can't get back to the originals.

If you want to stop the mean comments, I don't know that you can.  If
this is Alzheimer's, she's going to get angrier as she loses more of
her abilities, and you will get more stressed out.  People here will
teach you some tricks that may help, but mainly you should try to
think in terms of having the strength to put up with it, rather than
needing her to be different.  That requires support.

I don't know.  My mother has been turning her nose up at foods she
used to like, whether I make them for her or we go out.  She lives on
cookies and chips, with the occasional serving of salad or pasta.
I just read in an AARP publication that older people need more protein,
not less, but can't find a way to get it into her.

I may try reducing the amount of sweets and see if hunger drives her to
eat other things.  If your grandma can still get her own groceries, that
won't work for you.

She could live another 10-12 years with Alzheimer's, though at some
point would probably have to be institutionalized.  Can you afford to
be off work for years?  And how would you get back into the work force
then?  Think about the long term.

Hi Turtle,

I've been thinking about your situation - and I think you really need
to be looking ahead concerning her care. The operating assumption with
AD always has to be "this is a good as it gets" and the corollary to
that one is "its going to get worse, much, MUCH worse." That isn't
being negative - that is the reality of the disease.

It won't take long before she will need 24/7 supervision i.e. you
won't be able to leave her alone for a minute. So, if you are feeling
like you have no life right now, and having some trouble coping,
consider that you are really at the top of the hill with this thing.
So - come up with your plan. It may be daycare for a while so you can
work, but ultimately, it will require a situation where someone is
with her all the time (and I do mean ALL the time). If you intend to
keep her at home, you will need help. Sleep disturbances are also very
common with people with AD - so in short order, it becomes next to
impossible for anyone to be the caregiver by themselves. Ask Evelyn.
She and her husband are retired, and with two of them, able to spell
each other off, and using daycare, they found it difficult to look
after her mother in law, who is now in a facility.

I'm not trying to scare you - I'm just trying to encourage you to be
realistic about what you can personally provide alone. No one wins a
prize if caring for a love one destroys their ability to work (you are
young and your life will go on, so you need to be able to support
yourself), their physical and emotional health, their sanity, their
social life etc.

Start looking at assisted living and other options in your area. Find
out about costs, waiting lists, facilities, programs. Do the homework
now.  You may not be ready to think about moving her right now, but
you need a well thought out plan ready to go for what will inevitably
come - probably much sooner than you think.

Mary G.