Two week later: Big Changes

Mom was placed in a nursing home two weeks ago today.

Today, she was discharged from the initial institution and Dad and I
moved her 75 miles to Petaluma to place her in another facility that
was better suited to dealing with her "ambulatory Alzheimer's" . She
has now been placed in the only facility in Lake or Sonoma Counties
that has a locked Alzheimer's unit that is supervised and designed
for the wandering patient.

After promises and assurances that the first facility had the
staffing and ability to create a care plan for an ambulatory patient,
Dad was contacted at the end of the first week and told that Mom did
not fit into the services provided by the facility and she would need
to be moved. This created more stress and consternation then initial
placement had just one week earlier. Dad began to scramble to find a
bed in a more appropriate facility and the stress placed on him was
tremendous. After significant urging in a phone call I made, the
original facility agreed to assist in searching for an alternative
site but ultimately Dad did all the research and had to do his own
new private placement in the next facility. Very frustrating.

The original facility failed to do a full and appropriate patient
assessment which would have indicated the possibility that the
patient and facility did not "fit" each other. But no, one week and
then a request that she be removed and a second week to find a bed.

Strangely, Mom seems more subdued and at peace with less emotion then
she expressed just two weeks ago. Dad signed the discharge papers and
a wonderful staff lady had already dressed Mom and packed her
personal items and we were ready to get in the car and start the
drive. Mom had no questions, she was only momentarily pleased to see
either father or I and then she drifted into a nap while we drove.

I was very concerned about the admission process at the new facility
and I asked Dad to enter first and ask the director to have staff
prepared to receive mother at the front door. What a difference from
the place we had just left. We were expected and the staff was
already prepared with a program supervisor and CNA and the facility
director waiting at the door to greet her. The executive director
opened the door for Mom, said, "Hello Marjorie, welcome, we have been
a expecting you."

Mom burst into the biggest smile, said, "Hello, it is so good to see
you" and gave her a hug like she was reuniting with a long missing
daughter. The two staff greeted Mom by name, began chatting with her
and taking her by the arm gently urged her into the hall and down to
the unit. With the merest hint of concern Mom walked off and never
looked back.

Dad signed papers with the director and she answered all our questions.

I learned more about what a locked Alzheimer's unit consisted of and
left the meeting certain that the facility and Mother's needs were
finally matched and the care would be wonderful. I noted to the
director that Dad had not been asked to sign a "consent to restrain"
form and she explained that they were a "no restraint" facility that
allowed the patients in the locked unit to wander at will in the
locked area. Personal items are kept to a minimum and the Alzheimer's
patients are allowed to wander into each others rooms, nap on each
others beds and not be limited to "this is yours, do not touch other
people's things." She explained, what we already knew, that the
concept of personal possessions is one of the early concepts to
"leave" with many Alzheimer's patients and rather then fight the
loss, the patients are allowed to wander.

Reality Check;

I was quite upset that this move had to take place. It was upsetting
to Dad and it all seemed so easily avoided if better steps had been
taken two weeks ago to review an ambulatory patient care plan before
admission. But all my stress was for nothing. When I saw Mom greet
the new director with the joy of reunion with an old friend, I
realized more then ever that her needs are best met in a care center
and I think we finally found a match. Mom never said my name today, I
got the same level of greeting as the director and Mom had no tears
when she saw Dad, just a rather quick greeting and on to other things.

Next step, making a visit to Mom's new home.

Tomorrow is the Day

Yesterday a new grand baby was born to a coworker of mine. Last week
the wife of a dear friend and SDA leader died from a stroke. Today I
rescued a western grebe (it is a bird) from certain death and gave it
a safe home. Today another family received word that their son was
accepted to college. Tomorrow Mother is admitted to a nursing home.
The weather is supposed to be wonderful, partly cloudy, temps in the
low 80's, should be very nice.

This week has become a marathon of preparing for tomorrow. It all
really started back in July of 2001 when Mom and Dad and I spent a
very uncomfortable weekend together working on documents that both
Mom and Dad needed to sign, but we already knew then, that it was
mostly Mom that needed to sign. Financial Power of Attorney, Medical
Power of Attorney, Medical Do Not Resuscitate order, Sign a will,
Sign a final wishes plan, who knew then that tomorrow would be the
day that all those documents would be used, officially.

Since 2001, the planning to eventually deal with the placement of Mom
in a nursing home for Alzheimer's care has been the "back story"
behind so many other family plans that Dad has made. When to move
closer to town. Where to move, how far to a hospital, how far to
town? Important topics now. And now tomorrow has come. Thought it
never would.

The placement interview with the facility was held on Monday. Met
with the facility director, the director of nursing, the business
manager. The preliminary care plan was started and a bed was
reserved. Tuesday was paper work day. Completing the MediCal
application, completing the county social services application,
copying all the supporting documents from car title to phone bill to
bank accounts, it took three hours and felt like all day. Wednesday
was supposed to be admission day but the initial care plan for Mom
includes an electronic bracelet for security in her early weeks
during the most likely time when she may attempt to wander off. That
bracelet was not available until Thursday, so here we are.

Tomorrow, admission starts at 10.30 AM, we have been told it will
take two hours. Mom will be under the care of facility staff, Dad and
I will be listening to care plans and Dad will be signing "about 20
items."

Those are the facts. How do I feel? The facility is nice as these
things go. Twelve years old, four wings, central nursing station, no
negative smells (really, no smells), huge fenced in back yard with
cement paths and trees and grass. 99 beds, two dining rooms, patients
are three to a room. Private visiting rooms are available for family
visits. Facility is privately, family owned and visits are encouraged
regardless of posted visiting hours.

Mom has sat through hours of Dad and I discussing care plans and
paperwork and packing clothes and name tags and she does not
comprehend. She seems to react to general stress and that is all. She
wanders in and out of the bathroom where she chats cheerfully with
her two friends. (I just found out there are two friends, one, she
says, is very nice but the "other one is quite a brat") who knew? Mom
is struggling more and more with identifying food on her plate, she
will point to a food item and say, "I know that is good, but what am
I supposed to do with it?" All her food must be cut into bite size
pieces. She is struggling with taking her pills, the process, pills,
mouth, water, is more confusing and she has a heightened gag reflex
that is going to cause more trouble in the future. She also has
barely controlled edema in her lower legs and also has subcutaneous
bleeding on one calf which may indicate the return of the vasculitis
that has plagued her for many years. Her care has started to kill Dad
and her weekly bathing assistant has started to really struggle to
safely control Mom on bath day. Mom's confusion has kept Dad on very
limited sleep for weeks and weeks and it all comes down to tomorrow.

But how do I feel? Pretty much no idea how I feel. I am keeping busy,
I either binge on food or feel like throwing up, I have a hard time
sleeping and I wake up at 4.50AM. Apparently I am fine. Dad is
coping, keeping busy, losing weight, (he has lost over 50 pounds in
the past two months). He is tending his garden and cracking walnuts,
taking Mom to day care so he can go shopping, keeping busy. He calls
me about 4-6 times a day. He regularly calls to talk with both my
brothers in Tennessee. he is very tired.

Tomorrow starts in 13 hours.

Interview of a lifetime

Dad is scheduled to have an interview with a care center for Mom this
week.

Do not know just what happens then or what happens next (yes, I know
what happens next but allow me a little denial), or when anything
will happen but this is the next step.

Mom and Dad and I had lunch together today. I made a vegetarian loaf
and we broke bread. Not like it will be the last time or anything,
just, it seems we are coming down to some more last times each time I
visit. Mom can still feed herself but she does not know what the
items are on her plate, or which plate is hers or what the difference
is between her plate and my plate. She took a slice of bread and then
remarked that that thing was on her plate and she did not know just
what to do with it, but she thought she should eat it. So Dad cut it,
buttered it, and she was fine from there. She had a bowl of
strawberry's for desert and she still wanted just one more spoon of
vege loaf so she tossed that on top of her strawberry's. Which is
fine, it all gets mixed soon anyway, but we usually wait.

What is more distressing is her losing battle with thoughts and words
and speech, well, not actually speech, she can speak fine, she just
can not string three words together into a thought. She did have a
memory of the lady who comes in once a week to help her bathe, she
was quite upset last week when the lady asked her to take a shower.
Mom told me that the lady told her to take a bath and she told the
stranger that she did not need any help taking a bath, she never had
needed help taking a bath, she would not start needing help with her
bath now and besides, she did not need a bath. Mom told me the lady
insisted on a bath so a bath was taken. (Dad confirmed all this and
more and said it was quite the time)

So Mom had this memory from about four days ago. But when I walk with
her outside she can only talk and mumble about how glad she is that I
am here and could I help with the problem people in the house, in the
bathroom and any dark room.

Apparently she goes through the house turning on the lights all night
and then she raids the refrigerator and freezer looking for
something. So Dad not only has dead bolts on the doors he has a lock
on the freezer and fridge and he has changed the lights so they will
not be on all night. Joy for all.

So the interview this week. We will see what happens next.

Looking for a home?

Dad has been doing a lot of research on what the assisted living
options will be for Mom in the future. As she slides into oblivion
and requires more care it seems that the future will probably arrive
this year, 2007.

There is so much to learn about the minutia of MediCal and the
details of the application process. Desiring the very best for Mom
and looking for a care center mixed in with all the related paperwork
seems to be just more stress then any of us need. Dad has an option
ten miles from his house, other options range up to an hour away from
his home and the hope is that Mom's condition and medical needs will
be a match with the services offered near home when the time comes.

"When the time comes" is a euphemism for... "this is actually
happening and it is happening right now but no one wants to say it
out loud that with in a matter of months Mom will be in an
Alzheimer's unit of some sort and we will have started the "next
stage" what ever that is. It is hard to sort through feelings and do
the work needed at the same time. Sometimes the work needed is to
take calls from Dad at 12 noon when I am at work and he is frustrated
and needs to talk and share the latest thing he has learned about
government paperwork or legal requirements or waiting lists or on and
on.

While we wait and live and work on a smooth future the lady that is
helping with Mom once a week continues to come in and tell Dad each
week that he should not be trying to care for Mom all by himself for
six days at a time without a break. So he takes Mom to day care, now
on three days a week for about four hours a day. It seems to be
helping him. Dad does comment occasionally about "guilt", a word he
does not often use. He feels guilt that he is dropping Mom off a the
church for day care, he feels guilt as he looks for a care center to
care for her, he feels guilt that has no rhythm or reason, it is just
there.

And sometimes, (often) I do to.