A note from Jeri

I had a long chat with Grandma today.  Since you're talking to therapists about her, I thought you'd like to hear about it.  It was unlike any conversation I've ever had.

It started with the usual mindless chitchat, and then a question she asks me a lot: "do you have a boyfriend?" and my stock reply is "it's worse than that, I'm married."  Usually that leads to me gently reminding her who Phil is, or not, and us joking about it all, and then she drops it and asks me what I've been up to lately.

But not today.  Instead I got "What??? You're MARRIED?" And then 15 minutes of her going on an on about how she couldn't believe I got married and didn't tell her, and how hurt she was, and how she might not be able to forgive me, her favorite grandchild, how could I do this to her, on and on for FIFTEEN MINUTES.  I didn't try to correct her; I never do.  I just played along.  But I started to really worry that this new thing was permanent, that now I've hurt her and we will never be the same again.  I said a lot of "I thought I told you, maybe you never got the invitation I sent" kind of things.  It was friendly and joking by the end.  But what surprised me was how she did not let it go for so long.  There was never that moment when the conversation stops and she starts over, like there usually is.  And she did not once ask when she was going to see me.  

So that was interesting.  I hope she's okay.  It's sad that this very lucid conversation would make me worry.

New Quirks

I decided we should not all go to Atria yesterday, especially not the grandkids, who don't really know her and she doesn't know them.  I was afraid too many people would be too overwhelming for her, so just Tom and Ned went.  Apparently other than answering the door in her bra and having to be asked a couple of times to put on a shirt, she was more the "old normal."  She even knew Jeri when Jeri called while they were there.

Today I went over to pick up her laundry and see how things were.  Again, she was more the "old normal" though the feeling that "something is wrong with my brain" seemed to be stronger and she spent a lot of time holding her heads in her hands..

But at one point we were in the middle of a conversation and suddenly I realized her eyes were closed and she was not aware I was there.  I thought for a minute she had died.  It was only a few seconds, then she gave a startle-like jump, looked around like she didn't know where she was and then was fine again. This happened 3 or four times while I was there, once it was like she froze in place--her eyes were open, but she was "gone" and then jumped and was back again.

I'm wondering if she is practicing dying.  She says it feels like her brain wants to leave but she doesn't want to.

I have written to make an appointment with the resident services director to talk about this new quirk and also what her options for additional care at Atria are...and how much raising her care level will cost.

Worse day

I only stayed 30 min at Atria today.  I had to get out of there because I couldn't stop crying and she hadn't noticed that.  Waited till I got to the car to break down.

Jeri had sent her a pacage, c/o me, and I brought it to her.  She opened it and had difficulty reading the card (she has difficulty reading these days) and didn't say anything about it.  I was videotaping it so I could show Jeri her reaction.  Fortunately the video is too long, because it's also too depressing.  She took the picture out, looked at it and said "who are these people?"  I told her it was Jeri and Phil and she said "Oh...I don't recognize her."  Later she picked it up and said "I don't know these people."  I told her again who it was and she said "I guess I never met her."  That was almost the worst for me because no matter how bad she is, she always knows who Jeri is and always asks when she's going to see her again.

She picked up the note I had left for her yesterday, saying I'd been there an hour but she was sleeping and that I would see her today.  It's signed "Bev."  "Bev," she said.  "Who is Bev?"  I said "I'm Bev" and then asked her if she knew who I was.  She got this blank look and said "No I don't."  I said I was her daughter.  I thought she understood that until later she was very vague and I said "Do you remember who I am?"  She said "Well, we're talking and you told me you're my daughter and I believe you, but that means nothing to me."

Then I mentioned Fred and there was no recognition.  I told her he was her husband.  Still no recognition.  I went and got his picture and showed her.  She said "Well, he looks like a very nice man, but I have never seen him before."  I told her again that he was her husband, that they'd been married 18 years and that he died of cancer.  She asked how long he'd been dead.  I said "He died before David, so more than 20 years."  Then I said "Do you know who David is?" and she said no
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I had also brought her a photo of her and her parents, taken in Inverness when she was probably in her mid 30s (I have posted pix of Karen and me with our grandparents on the same day).  She did recognize her mother and father but said that if you took her out of the photo, she wouldn't be able to recognize them.

Somewhere in all of this, I started crying and knew I was on the verge of losing it, so I left, feeling bad because she was sitting there trying to "figure out how I'm going to live with all of this."

I told her we would see her tomorrow with Tom and the girls.  She didn't have a clue who I was talking about.  She doesn't know Tom is her grandson.  I'm wondering if we should even go, but we will.  She likes little kids -- or she did -- so the girls in a short period should bring a smile to her face, and the girls need to have exposure to her so they will remember.

This is the worst day with her ever.  My only hope is that tomorrow it will be a little better, since it does seem to come in waves, but today I just want to sit in a corner and cry.

I wish I still drank.

Very Bad Day

Today was a terrible day.  I decided NOT to go to Atria for lunch, but to go over after 1 p.m., by which time she should be home from the dining room.  Only when I got there at 1:30, she was still asleep.  Deeply asleep.

I wasn't sure what to do (after checking to make sure she was breathing) so I turned on the TV, hoping it would wake her up.  It did, but she just went to the bathroom and then went back into her room and shut the door.  I got up and opened it and she was standing there, hair standing straight up on her head, looking frantic. I told it was 1:30 in the afternoon.

She put on clothes (the dirty clothes she has worn for the past week...with big black blotches on the pants) and came out to sit on the couch with her head in her hands and kind of moaning softly.  She said that all her insides were shaking and her stomach was rolling.  She sat like that for a very long time while I just watched her, feeling helpless and tearful and wondering if I should make another one-time appointment with my therapist.

She kind of toppled over to her left and after checking to be sure she was still breathing, I decided she was going back to sleep and I decided to read while I waited.

 In a bit she sat up, looked at me, and groggily asked "How's Mom?"  I said "Mom?  YOU're my Mom."  She obviously thought I was her sister.  Then a couple of minutes later she asked me where Bev was.  Then she put her head in the other direction and went back to sleep.

I let her sleep for about an hour, then decided to leave.  I started to get up, but made a noise and it woke her up.

"Oh...HI!," she aid, seeming brighter.  She asked how long I'd been there and when I told her I'd been there 2 hours, she asked "Why didn't you wake me up?"

Jeri called, but I couldn't talk with her because my cell phone battery was about dead, so she called back on my mother's phone.  It was funny listening to my mother run through her list of about 4 questions that she always asks Jeri and then told her she would talk to her later.

She was still somewhat out of it when I left, but definitely better than when  got there. I stopped by the front desk, told them she was kind of disoriented and could they please check on her around dinner time  I don't know if they will do that, but I tried.

I'll go back in the morning and stay for lunch and see if she has come out of it.  Walt and I were supposed to go to a G&S concert with some Lamplighters in Golden Gate Park, but I don't want to leave her.  He's going to go on the train,

Haircut, finally

The day at Atria actually went pretty well.  She was sitting outside the dining room when I got there and actually talking with someone.  We went into the dining room and sat down.  Pretty soon Margaret came in and sat with us, and soon Merlina joined us.  Merlina seems to have a special interest in my mother, knows her eating habits, and joked with her about not having dessert until she ate all her lunch.  Surprisingly, she at fruit and a taco, instead of the soup she has every day.  Her memory impaired a lot of the discussion at the table, but she seemed to have a good time and I enjoyed having lunch with all three women.

She had an appointment at 1 to have her hair cut.  She's been saying she didn't want to go ever since I made it.  Today she asked why she didn't know anything about it.  But I didn't give her a choice.  Her hair hasn't been washed in a month, at least, and was just so stringy. 

We got upstairs 15 minutes early, so we sat down at one of the puzzle tables to work a puzzle. She first said she didn't know how to do it, but she has been an avid puzzle do-er all of her life and soon she was looking for pieces and trying them.  We didn't stay long because of the appointment.  Again she resisted when I told her it was time to have her hair cut.

I left her with Lucy, the hairdresser, and she looked lost but Lucy told me to come back in an hour.

It was a new mother waiting for me.  Not only because her hair looked so good but because she was happily chatting with Lucy...you know...like a normal person.  God, I wish she would get involved with other people.  She is so much better when she has some socialization around her.

I had taken before and after pictures so I could show her stepson...and post here.  I said something like "look how much better it looks" and showed her both pictures.  She said "look the same to me...it looks different to you?  Well, if you say so."

Sigh.

TB Test

I went to Atria to take my mother to her TB test at 11:20.  I knew she wouldn't remember.  Someone from Atria met me in the hall and said that she had just awakened her.  Not surprisingly, when I came in, she was upset, disoriented and didn't know where she was.

I pushed her to get dressed and told her I would make sure she got to the room where they were doing TB tests.  She just said over and over again that her head wasn't right and that she didn't know where she was or what she was supposed to be doing,  God, I wish I knew how to answer that question for her!!!

She was a tad better when we got back after the test (though she wasn't sure where her apartment was) because when she pulled the "don't know what I'm supposed to be doing" line I reminded her that the thing she was supposed to do today was get her TB test and that she had done it, so she had completed what she was supposed to do and she could relax the rest of the day.  Surprisingly this did seem to calm her down, at least momentarily.

I didn't stay long because I was in the middle of a zillion things at home and I have to go take her to get her hair cut tomorrow.  She really doesn't want to do that, but when I tell her the beauty parlor is inside Atria and she won't have to leave the building, she relaxes a bit, but still doesn't look happy about it.  I, however will feel much better when it is finally the right length again.  She looks like an old crone these days because not only is her hair too long, but she sometimes doesn't bother to brush it and when she does, it is just all straight and stringy. If she could actually look in a mirror and understand how bad she looks, I don't think she would be so unhappy about being dragged to the beauty parlor.

Her wound is looking better, but goddammit, she put nail polish on it again.  I don't know WHY she does that.  It's either nail polish or lipstick.  The lipstick is easier to clean off!

Loss of Emotions

I wemt to Atria and found my mother sitting out by the Dining Room.  She asked her usual question--what I'd been doing that was exciting.  I told her I was trying to arrange a luncheon for several girls from my grammar school days.  She wsa non responsive.  I don't think she knew who I was talking about. All she said was "I'll have to see how I feel.  I don't feel well today."  She was relieved when I told her she was not invited, so she didn't have to worry. 

Then I told her about the sad news about her friend Jeff, from whom I received an email today,  She used to work with Jeff at Hospice of Marin and though she seems to have no memory of her female friends there, when I mentioned hearing from Jeff a few weeks ago, she instantly brightened and said of course she remembers Jeff and that the two of them had great fun together.

But today I learned that he has been diagnosed with liver cancer and is about to undergo chemotherapy. He would like to see my mother and I told him when he was up to it either we could go there, or he could come up here, whichever worked best for him

I told her what I had learned and she didn't remember him.  When I gave her enough information she said oh yes, she remembered, but I'm not convinced that she did.  And the news of his cancer elicited the response "Well, life goes on..."  It bothers me so much that she has lost her ability to feel any emotional response to news, good or bad.

She really didn't feel well today. She said all her insides feel like they are shaking and when I left her to try to find some of the non-existent coffee that Atria never has any more, I came back to find her bent over with her head in her hands. Not knowing where she is or what she is supposed to be doing (which has been her daily problem for the past three years) is driving her crazy, and I just don't know how to help her.  She can't remember an explanation of where she is and if you give her a chore to do, she doesn't want to do it, she just sits there wondering what she is supposed to do.

Hoopy Doo

I took Lizzie to be groomed today.  She was looking so good, I decided to take her to Atria.  This is something I would NEVER do with Polly, but I felt I could trust Lizzie...and I could.  She wasn't too interested in having anything to do with my mother, and my hope of getting a picture of her sitting next to my mother was not going to happen, but this was as close as I could get

But after she had thoroughly sniffed every inch of the apartment several times, eaten all of the cookie crumbs my mother had dropped on the floor next to her chair (I come by this trait naturally, apparently!) and started to calm down, she finally decided to get to know my mother.

It was, all things considered, a nice visit and I will bring Lizzie again some day.  One funny thing happened. She usually asks me if I'm going dancing tonight, though I always tell her I hate dancing. Today she forgot the word for "dancing" and asked me if I was going "hoopdy-do-ing" tonight. (I suspect I'd hate "hoopdy-do-ing" too.)

Life in Threes

My mother has this odd verbal pattern.  She often speaks of things in threes.  It's worse now, with the dementia.  I can't remember when it started.  For a long time whenever she can't remember something, or can't figure things out, she will hit herself in the head and shout "stupid, stupid, stupid!"  She also does this when she sees old age spots on her arms and doesn't like them.  It makes me angry when I find myself doing the same thing from time to time and I try very hard NOT to.

But it's not only stupid-stupid-stupid.  When we go driving around in Davis, she often says "cars, cars, cars," when she sees cars parked on the street or in an apartment parking lot and then comments on how there are no old beat-up cars in Davis, but they are all new looking.  

In the dining room, she will look around and say "people, people, people."  She always says "people" and "cars" in a tone that implies she thinks there should not be so many people or so many cars.  I never really know how to answer that.

But then she also often says "trees, trees, trees" when we are driving around somewhere green--and I know she loves trees.  And if we happen to pass a field of cattle, it's "cows, cows, cows," in a tone that asks "what are cows doing here?"

In a noisy place, it will be "talk, talk, talk," as if when people, people, people are gathered together in a place they shouldn't be talking because it disturbs her, or if people have brought their children into a restaurant, it's "kids, kids, kids."  I know she likes kids but when people, people people and kids, kids, kids get together there is always talk talk, talk and that upsets her.

I think a part of this verbal oddity is that even pre-dementia she was ever the social butterfly who took it upon herself to keep conversation going.  Never to let silence just be.  In the days when she was still going to Santa Barbaa with us, I really got to hate the 8 hour drive because she kept herself awake and kept a conversation going.  Walt and I generally either drive in silence or listen to a book on tape.  It was exhausting to have to have an 8 hour conversation so that silence didn't bother her.  So I think that now when she has nothing to say, she can always say cars, cars, cars or trees, trees, trees and that kind of fills the vacuum.

Today we went to her last appointment at Kaiser.  Her wound is healing nicely and I have antibiotic to put on it daily until the scabs come off (unless her rubbing her face rubs them off, in which case we'll have to watch for another infection).

Add to things she does not handle well:  waiting for a medical person to come and see her  I think it took maybe 10 minutes for the nurse practitioner to come and look ather, and there was lots of heavy sighing, lots of asking what we were waiting for, asking if this is an appointment for her or for me, lots of asking why people were standing around doing nothing.

But the news about her wound was good and I told her that because she was such a good girl, I would treat her to an ice cream sundae.  I had decided this after yesterday's Chinese food lunch, which she seemed to enjoy so much.  There is a wonderful ice creamery, Fentons, in Vacaville, about 20 miles away, which makes outrageous ice cream treats and knowing how much she likes ice cream, I thought it would be a nice treat for her.  I got her to eat another cereal bar for breakfast, so at least she has something slightly nutritious (but not much).

The place was full (people, people, people, kids, kids, kids, talk, talk, talk) and in that open barn-like restaurant there is no sound-absorbing material, so the noise level was high.  But we each had straberry sundaes which were very decadent.  Fentons' sundaes always come with a bowl so full that the syrup poured over the ice cream always ends up pooled in the saucer on which it is served

 

She ate every single bit of her sundae (as did I) and we went away happy and sated...and maybe a little bit naughty.

I decided to go home "the back way," up Hwy 505 to Winters and then through the orchards back to Davis. What a GREAT idea.  She was in heaven with all the trees--and the variety of trees.  

As we were approaching Davis she started yawning and I could see that she would take a nice nap when she got home.  She actually told me she had a nice day today.  I can't remember the last time she did that.

I'm going to have to find more activities like this, that take minimal walking and especially that are cheaper.  I've spent nearly $100 the past two days, but it's been worth it to see her enjoying herself.

Lookin' at Houses

Yesterday I went to Atria to take my mother her morning's pill.  She slept until 11:30 so never had breakfast, though I got her to eat a breakfast bar.  She was complaining, as she frequently does, that there was nothing exciting happening for her.  She had nothing to do, nobody to see, etc.  All the things her hermit-hood has brought her and that she is unwilling to do anything about.  

But I decided to take her out to lunch, just to give her something different to break up the monotony of her day.

We went to a quiet Chinese restaurant where I have taken her before.  Busy restaurants are too noisy for her and she gets confused, but this place is perfect.  It's quiet and she likes Chinese food, which they don't serve at Atria.  And she ate.  I had asked her which she liked better, mushrooms or broccoli (thinking I'd find that out ahead so we could order a vegetable dish) and she said "uh...neither."  Another change.  She used to practically go into ecstacy at mushroom dishes and was always pleased with fresh vegetables.  But she now says she doesn't like vegetables. We we had honey walnut chicken and chow mein.  She even went back for seconds on chow mein, but because it's difficult to dish up she mainly had meat and celery, so I figure she had something nutritious.

And then after lunch was over, I decided to go driving around looking at houses.  She is always so happy to look at trees and greenery and flowers and I figured we would just drive around a couple of housing developments so she could look at what the houses were like.

It was a good idea.  She loved the houses.  She loved the vegetation and she seemed to be in a good mood when I dropped her off at Atria.  I came home to do her laundry before returning for the afternoon pill.

I even managed to sneak out the clothes she has been wearing all week, which she insists don't need washing, despite the stains on the pants.

When I came back in the middle of the afternoon for her second she had no memory of going to lunch or driving around looking at houses, but in the moment she enjoyed it and that made it worthwhile.

All this crap

I went to Atria for the first dose of medicine around 10:30, but it was after 11:30 before my mother woke up.  I had brought my Kindle and sat there reading "Still Alice," kind of a surreal experience, as it is about a woman with Alzheimers.  I saw the movie a long time ago with my friend Lisa and I enjoyed it (if you can "enjoy" a movie like that) but the book was so much better.  The movie shows Alice as she begins to deteriorate from this  awful disease, but the book gets inside her head and you not only see what happens to her, you experience it from inside her head.  Reading things like this always helps me understand what is going on inside my mother's head.

She woke up in a silly mood and we laughed a lot.  Her wound is looking much better and today will be her last day of the antibiotics.  She still doesn't remember that it's there and doesn't remember why she doesn't have her glasses, but I think I will bring them back to her today, as well as her lipstick. If she decides to rub lipstick on the wound now it won't make a difference, except cosmetically.  Tomorrow she has her last follow-up with the nurse.

At noon, she remembered it was time for lunch (she had only been awake half an hour, so had no breakfast) and I walked her down to the dining room and left her at a table with some people she knew, so I was sure that she would actually have lunch.

She was sleeping when I got back to Atria and I read for a bit longer, though she woke up about 10 minutes after I got there.  In the afternoon she was groggy and then got into "all this crap" mode waving her hands at the cabinet on which she has all of the family photos and saying repeatedly "how did I get all this crap?" with a disgusted look on her face.  I reminded her each time that those were photos of people she loved and she would remember that she regularly sits in her chair an talks to them and then a few minutes later she would wave her hand at them and ask about what she should do with all this crap again.

When it was 6 p.m., I walked her back to the dining room.  On the way out, she saw the food I had bought for her on the stove and said "look at all that crap.  I should just throw it all away."

I know one thing for certain.  When I get to the state where my mother is now, and I am convinced I will get there eventually, I definitely won't be worried about "all the crap" in my living area, since "all the crap" has been my life.

3x/Day

But it's not so bad being a daughter this week.  When I last mentioned my mother, I had taken her to Kaiser to have her stitches out, but the doctor decided they weren't quite ready to come out and so we made an appointment to come back in two days.

When I picked her up two days later, she looked like a clown.  For some reason known only to her, she had put lipstick on the stitches and on her cheeks.  She denied doing it, but you could not deny that her face had these big red splotches on it, and when we got to Kaiser the nurse started dabbing at the splotches and red came off onto the gauze with which she was dabbing.

She got as much of it cleaned up as she could and took out either all or all but one of the stitches, swabbed the wound area with disinfectant and got a nurse practitioner to come and check things.  She said that the area was infected, so prescribed an antibiotic for her to take three times a day for the next week.

That was when we canceled our plans to go to Santa Barbara and I have been going to Atria three times a day to give her her medicine (I told the girl at the front desk I was earning frequent flier miles at Atria!).  I had hoped to maybe get someone at Atria to give her the evening pill for 3 days so I would not have to come in at 7:30, but she has to be on their "medicine program" for them to give her3 damn pills, so that wouldn't work.  

The nurse practitioner also decided that her glasses were rubbing against the bridge of her nose and making the infection worse, so she shouldn't wear her glasses.  Fortunately, she sees as well without them as she does with them, she has told me ever since she had her last cataract surgery, and the glasses are now merely a habit, so not wearing them would not be a problem for her.

I told her NOT to wear her glasses and NOT to touch her wound and spent my time the first day yelling at her whenever she touched her wound, which she does not remember that she has.  I took her glasses off and wrapped them in a paper with DO NOT WEAR GLASSES written on it and rubber banded around the glasses.

The first morning I went over to bring her coffee and give her her first pill of the day.  She was already up and dressed, and had put lipstick on her wound and was wearing her glasses, my note not to wear them, neatly lying on the kitchen counter.  I asked her if she had put anything on her face and she said "just makeup."  Sigh.  I was so frustrated with her and she was so depressed that she couldn't remember anything.  I cleaned up her wound and put some Betadyne on it and then ended up taking all of her make up and her glasses home with me and as we talked, every time she touched her wound, I would remind her not to do it.

When I left, she looked like a very depressed, very old lady and I went home feeling guilty

But there is an advantage to seeing her three times a day, I discovered, when I went back in the mid-afternoon to give her the second pill of the day.  She was a different person.  Much more "with it" and cheery and seeming to have forgotten the problems of the morning.  We had a nice visit an I told her several times that the dining room was serving prime rib for dinner and to remember to go.

When I returned at 7:30 for the last pill, I asked her if she had gone to dinner and she said she was eating it now, pointing to a bowl of potato chips.  The next morning, a woman stopped me to ask if my mother was OK because they haven't seen her in the dining room lately.  I guess she's just eating snack food.  So I went out and got better snack food -- cashews, for example, which she loves.  I bought a pound or so of them.  I also got a box of ice cream cones and some oatmeal cookies as well as some breakfast cereal bars.  Nothing nutritious, but better than potato chips for dinner.  There  are better things I could have bought, but I had to buy things I knew she would actually EAT....and she has no microwave or stove, so I couldn't get anything that had to be heated.

Yesterday the wound was looking better and I decided it didn't need Betadyne any more and that it was starting to heal properly.  Also, somewhere in that demented mind, the message to not touch the wound must have sunk in because I noticed that she would rub her eyes, but avoid the wound, though she doesn't remember she has one. (I went and got some Visine for her itching eyes).

She feels bad that I have to come three times a day and keeps asking why I can't just leave the pills because she will remember to take them.  I think even she realizes that's a silly thing to expect.

I had not planned on having lunch with her yesterday, but walked her to the dining room to make sure she went to lunch, but there was nobody at her table, so I ended up sitting with her.  She always orders just fruit and dessert and I have learned how to order at least vegetable soup for her and make her think she has ordered it.

I don't know if she went to dinner, but I suspect not, but at least she had something slightly better than potato chips to eat.  

Seeing how things have gone with her since we saw the nurse, I'm glad that I stayed home to be around 3x/day for her.

But I sure would have given anything to have been a part of the world premiere of Ned's new movie.

Disappointment

But because of my mother's fall and the need to give her antibiotics 3x/a day, along with some workmen who can only come to fix our garage door on the weekend, we decided we would have to give up our Santa Barbara trip for Tom's birthday this year.  I don't have a clue what we will be eating but it will be nothing traditionally 4th of July.