A WINDOW ON HER WORLD

Good Sunday Morning! Everyone is still in bed except the dogs and me. So far it is a good time to collect my thoughts from over the past few days and try to put them down here.

Sometime last year I purchased a regular planner calendar that was a week-at-a-glance and had about 10 lines or so next to times of the day. This is how Becky made notes about Mom's day so I would know what time she ate, what she ate, her demeanor during the day, problems, successes, outings, interaction, etc. Ten lines was not enough to capture all of that, so when I went through some of Mom's things that we brought over from the storage unit, I found a couple of empty journals - the books with empty pages. Becky began using one of them each day and has been doing a great job of writing about Mom's day rather than "reporting" on it. In order to communicate what our "norm" is, I want to transfer some of it here from over the past week or so.

Monday, Jan. 4th: (Becky writes) Marge is having a normal day. Her speech is still mostly mumbo jumbo, but at times , just as plain as day. She now mostly call Heidi, Dinky. Her memory of getting her nails done are that this lady sat at the table and said 'put your hand on her' and then painted my nails, but next time I'm telling her no, because this color is pretty, but I've never had it before. Off and on all morning she kept getting in the cookie jar and nonni jar, so I put them up.

Tuesday, Jan. 5th: (I write) Up at 6:30. Joe gave her breakfast and pills. No Tylenol. No coffee. Shower and Tylenol by 7:30. (Becky writes) Lunch at 2:00 from Chicken Express. She helped move chairs for me to clean carpet, went to garage and I steered her back in the house, pulled a chair up and we talked while I was shampooing. She dusted the chest and looked through it, said it was her grandmothers. She wants it back under the table so children won't play on it. At 3:10 we treated ourselves to a scoop of ice cream and brownie. At 3:50 she had coffee with two cookies.

Wednesday, Jan. 6th: (Becky writes) Morning hours she was active and receptive but words are still oleo. She rocked Heidi and sang. She sat in the memory room and showed me pictures and who they were (her version). She sat at the dining table and showed me the crystal again. (I had unpacked about 6 or 8 pieces of crystal that we moved down here and and it was on the table.)...looked at pictures in living area and went to Julie's room and I asked her to come back in the living area. After she rested she was eager to go pick Julie up. We had some "out there" story telling today.

Excerpts from some other days:
She's been in a good mood all day but mostly quiet and confused. When asked to put on a jacket, she put her house coat on. She has been busy looking at things throughout the house all day.

Not real talkative but receptive and cheerful and alert. Wants to clean Julie's room so I stay with her while she folds things. Reception not as good as earlier. When I asked her if she wanted 1 or 2 nonni's she never could grasp what I was asking even when I held up 1 or 2 fingers. She still has on yesterday's clothes. I'm still working on that. (at 1:00p.m.)

We sat outside for a while and watched the birds and made things out of the clouds.

Today she is wearing her name tag. She has shown concern for Julie all day but I've insisted she not go in her room.

As far as this journal goes, she says it's no body's business what we do during the day "we can take care of ourselves." She said she wishes people knew that she was old enough to decide what she wants.

Mon. Jan. 11th: This afternoon she asked who the lady was that was here. When I told her it was Julie, she said "but we didn't go get her and bring her here." When I explained that she didn't go to work she said , "she's too small to work. She's just a little girl and measured her height at about 3 feet. She remembers her coming down the stairs, closing her door and coming into "the" room. I told her she 's grown up now and her response was that the woman was to big to be Julie. Then she focused on the trunk. She wants to take it to her room but said "they won't let me." She hung onto a birthday card for awhile but had no idea who the person was.

Tues. Jan. 12: ...been a struggle to keep her out of Julie's room. We made muffins while she tried again to talk me into letting her in Julie's room.

Thurs. Jan. 14: ...words are mixed up and reception is still slow but is eventually able to grasp what I'm saying. Issue is Julie. "our Julie is little, what happened to her?" I tell her she is grown now but she just gets this confused look and shrugs her shoulders. She dwelled on the crystal for awhile referring to it as worth a lot of money. She wonders what "they" are going to do with it. She's absorbed a lot recently by going through drawers, cabinets, trunk. She refers to most things as some thing her grandmother gave her. She doesn't want anyone taking it. About 1:30 she tapped me on the shoulder with tears in her eyes and said "they won't let me have my things out of the trunk. ...started verbalizing about the license plate on the wall (said it was from the car she wrecked), the light fixture in the dining room, the bowl on top of the hutch "from Italy". She said "I don't have any kids, but if I did, I would like to be able to show them these things, but someone in this house took them from me.

Fri. Jan. 15: Wow, the last 45 minutes have been tense. We were having a stand-off and I won. I told her if she didn't put on clean clothes and change her P&P we were not going to get Julie. Boy did she stand her ground. I finally said "never mind, I will call Cheryl and tell her we won't be picking up Julie today." I walked out of the room and watched her. I heard her say "OK, fine, let's go do it. She's not happy about it but she's clean.

I know, I don't write for a week or more and then I dump all of it at once. But didn't the different colors make it more interesting? Since I began this, Mom has been up and I gave her breakfast. When I am sitting here at the computer, she often brings things one at a time from her room to show me. This morning when Mom finished her PB&J, she brought her little bird that chirps to show to me. We had to make it chirp and feed it the little bottle she has. Then it was her baby who is a good baby and does not cry. I love on the baby and Mom puts her back to bed in the cradle. It is all quiet again so I am thinking she is back in bed also. It is after 9 and time to get dressed myself and get on with the day. Thanks for looking through this little window on Mom's life and keeping us all in your thoughts and prayers!