In
early April, Kathy responded to my concern about comforting Mom. She suggested that I get the book A Family
Caregiver's Guide by Laurie White and Beth Spencer from Dee, the Aegis
representative we first met. (I hesitate to say the Marketing Person
because she represented something better to us than sales.) Kathy said there was some good information on
how to answer questions and concerns: Listening,
acknowledging feelings, giving short answers, not complicated ones, and reassuring Mom that she is loved and she
is safe there.
Kathy
also pointed out that Mom was going through the same feelings we all were
having-- loss, grief, sadness and confusion. But I also worried that we had better coping
mechanisms than Mom. Mom was sometimes
so much like her “real” self that she didn’t fit into the Alzheimer’s profile,
and it felt that she was wrongly “imprisoned.”
“About the coming home part, “ Kathy wrote me, “I say to her ‘not now. You're in a safe place where they can help you. I love you,’ and then I try to change the topic and move on to talk about or do something else.”
Kathy
left in Mom’s room a little book called Nadine's
Visitors so people could write in it
when they visited—who they were, what they did etc.--and she would be able
to look at it and see that someone was coming almost every day.
Almost? I worried.
“The
main thing is giving her time to adjust and supporting her as much as we can.”
Kathy
added something appreciative about me—something more accurately said about her.
But
we were all grateful for any reassurance of any kind.
I got word from Suzy that during her
visit Mom had been at her best. We continued to communicate through e-mail.
Sunday,
April 10, 2011
Dear
Kathy and Suzy,
Just as you said, Suzy, Mom was really at her best today! I found her and
Kay side by side, Mom with her lunch tray and Kay with an Afghan over her from
chin to feet. It wasn’t all “up” when we got there at noon, but that
wasn’t Mom’s doing. Kay repeatedly said to Javier and me, “I think you
should leave” and “You’d better leave,” but she didn’t follow that up with “Or
they’re going to kill you and I’m going to be blamed.” She said she was
expecting company. She started asking us to leave about three minutes after
we’d arrived, and we’d been careful to greet her and talk to her, too.
Mom was eating a tiny bit of her macaroni and fretting about what it might do
to her BMs, but aside from that she was really lucid and tried really hard to
reassure Kay while turning her head to make faces indicating that Kay was none
too sane.
“What time is your company coming?” Mom asked her sweetly.
“How should I know?” Kay answered. She just thought we’d better be out of
the way. I had thought
that Mom’s idea that people were jealous of her was just a part of the
paranoia, but I think in this case, Kay probably really was. Mom said
something about the importance of being “ambassadorial” around the place.
Then Kay turned to Mom and said, “I
think YOU should leave.”
Mom looked at her somberly and asked, “And why
is that?”
Kay said, “Because company is
coming.”
Mom said, “I don’t ask you to
leave.”
Then Mom got up to leave and said to
Kay, “I’ll forget, but I won’t forgive,” which I thought might be the
Alzheimer’s re-arrangement of the words in the usual phrase.
But it was good to see Mom actually
walk into the cafeteria, and with Rocsana’s encouragement, Mom even sat down
for a few minutes.
We took pictures, which I think we
can put into the book that Kathy provided. (I added your visit,
Suzy.) I think the book is a really good idea! (We just have to be
careful that it isn’t so prominently displayed that Kay and others will feel
the need to tear it up or ask it to leave.)
Mom said she wished she could have at least a piano keyboard in her room, and
we said we’d look into it. I know she should be out of the room playing
the one in the cafeteria, but it would be nice if she could have an option ,
too.
She referred to Aegis as “this hospital,” but that was better than her telling
you, Suzy, that Jonathan had sent a card “to me here at the jail.”
When I asked her what she’d like me to bring next time, she said, “Something
you baked,” so I will take baked goods on Tuesday.
I took her a laminated version of the collage I thought had disappeared.
I’d added a picture of the Pleasant Hill Library and its address and a picture
of Aegis and its address + a little Oak Park Blvd. strip of a map. But
she told me that she now understood that she was right by the library.
“Kathy showed me.”
She
asked for Kleenex (we did not DARE borrow one from Kay) and more “Kotex,” and
then, as we were leaving, we saw you, Kathy, with your big bag full of
them!
Before Kay banished all of us including Mom, I made a reference to the Book
of Little Known Facts, and Mom said, “Yes, anybody would enjoy this.
They wouldn’t have to be…I think I’ll read it aloud to Kay,” and then as she
took in Kay’s glare she said, “ Maybe…Not.”
It was great to see her with you, Kathy, in the sitting room! That’s a
picture to put up.
Last Thursday Mom told me they’d put up an ugly picture of her, and I
agree. I saw it for the first time today. I don’t see why they had
to choose such a picture. Do you think it would be all right for me to
bring a substitute on Tuesday? I could provide one that was taken there
so it’s a “match” but one without her eyes closed.
Of course, we don’t want the others to be jealous!
Love,
Tina
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