Sleeping Beauty

Another step down for my mother yesterday. I went to deliver Depends and bring her a box of chocolates. She was sleeping, so I just settled in and waited to see if she would wake up. When she did she was *totally* out of it, mumbling constantly but I couldn't understand anything she said. She went to the bathroom, then came back in, sat on the bed and mumbled some more, then climbed back into bed to go back to sleep. I somehow think she never really woke up at all.

When I could understand her mumbling, she was wondering where here sister Betsy was and where her mother was.  I think that she spends all of her waking time and dream time thinking of her family, whom she misses so much.

On the "good news" front, they found her glasses, which have been missing for a week.  They said they were "in her room," but nobody knows where.  I had searched the room pretty thoroughly, so I'm impressed that they found them.

Big Blob

As good and as "with it" as my mother was the last time I saw here was as vague and out of it as she was yesterday. She actually got angry with me because she thought I was just a "big blob" who was sitting on her daughter, hiding her and she wanted to see her daughter. When I told her *I* was her daughter, she said I was not, but she didn't know who I was. She finally got up and got into bed, so I left. Gawd, I hate dementia.

Klonopin

What a difference a little bit of Klonopin makes. She's more "normal" today than she has been in weeks.

Exciting Things

I took a piece of our big apple pie to my mother in the afternoon.  I was so pleased that I finally had something "exciting" to tell her about.  The first thing she asks me every time I come to visit is "so what have you been doing exciting that you haven't told me about?"

I told her about our trip, showed her the pictures from Apple Hill, tried to be entertaining (she kept asking me what country it was in) and told her I had brought her a piece of the apple pie we had bought.

When I finished and went back to the chair to sit down, she said "so what have you been doing exciting that you haven't told me about?"

Sigh.

She "found" the container with the pie in it several times while I was there and I'm 99% sure she will never eat it, but I feel good about including her in all the "excitement" anyway, even if she didn't have a clue what I was talking about.

I talked with one of the aids, with Jen, who runs the memory unit, and with her doctor and we have all decided it's time to put her on anti anxiety meds, so she will be starting low dose Prozac soon. 

Maybe she can finally forget that "something is wrong."

Something's Wrong

They called at 9 a.m. (I hadn't even finished my coffee) and said that my mother was very agitated and they needed me to calm her down.  So I took my coffee with me, skipped breakfast and went to Atria.  (I was pleased to find that her clothes were no longer on her bed or on the chair)

She was agitated and confused, but not really worse than she has been on a bad day before.  I think they were concerned because she wanted to call her mother--she always wants to call her mother.  (Isn't it time her family all return and take her home to live with them--she misses them so much!)

The spiel is the same "something's wrong and I can't figure out what it is." or "I know I'm supposed to be doing something but I don't know what it is."  I've heard this every time for the 4-1/2 years she's been at Atria. 

We were in the community room and she decided to go outside to see if she could figure it out there.  We walked the distance of the garden and then into the little sitting room, where she told me over and over and over and over that she didn't know what was wrong, that people were not doing what they were supposed to do but if she tried to do "it" they'd tell her to leave "it" alone.  When I asked what "it' was she couldn't remember.  All she knew was the people weren't doing their job and that they wouldn't let her help.

I distracted her by showing her pictures in my phone.  It always brings me to tears because I can show her 3 pictures of Lacie -- her great granddaughter -- in a row and at each picture she will ask who that "cute girl" is and when I say "It's your great granddaughter," she has no reaction except to say she's never met her.  I remember how excited she was when Brianna was born, 9 years ago, and now she has no connection with either her or her sister.

Finally she went out to the garden again and we walked down to the community room and I asked if she wanted to go in and watch TV again.  Only when we went in, they were doing cardio exercises, so I started doing them too (they are all done sitting down) and, seeing me participating, my mother did too, though never fully committing herself (instead of raising her arm all the way up, just half way up, etc.

After half an hour of exercise, the aide turned on Lawrence Welk (and I felt very old!).  My mother seemed to have settled down and I had work to do at home, so I left and told her I would see her tomorrow (which I probably won't).  I left without incident and there have been no further calls, so hold the good thought!

Laundry

I spent an hour and a half with her, having brought her a bag of Lindt chocolates (the red bag on the left).  Her laundry has been mounting on the guest chair and I suggested she move it to the bed (which was a command too complicated for her to understand, but she finally got it).

So the entire hour and a half she would turn to her right and ask what the red bag was or where the "garbage" (chocolate wrappers) had come from, so I would explain and then she'd look to her left and ask where all those clothes came from.  Her response to explanation was either that they didn't belong to her and she couldn't hang them up because the real owner would get angry with her or that "tomorrow" she was going to "take the day off" and deal with the clothes. 

At one point when I showed her a photo of herself WEARING one of the jackets she's never seen before she never even looked at the jacket because she was so upset at how SHE looked.  

I offered several time to hang the clothes up for her but she didn't want me to touch them because she had to sort through them and decide which ones she was going to throw away.

When I left Atria, I talked with one of the aides and suggested that they wait until she is at dinner and is not in her room and then hang the clothes up for her.  I suspect she has been telling them not to hang them up because she wants to do it herself.

When I left her room, I gathered up all the candy wrappers and put them in the now empty bag an she was upset that I hadn't asked her if she wanted to keep any of those stuff or not.

Halloween for Old Folks

This is the decoration outside the door to the Memory Care Unit at Atria:

I found macabre humor in the idea of skeletons hanging on this particular wing of Atria, where everyone is--let's be honest--waiting to die.

I did take exception to the scarecrow sitting in the chair across from this display.

She's sitting in the chair where I sit while waiting for someone to come and let me into the locked unit.  Harumph.

There are a few skeletons and pumpkins hanging along the halls, but I suspect nobody knows what day it is and has no concept of Halloween.  I know my mother didn't, when I went to see her yesterday.

I hadn't seen her in almost a week but fortunately she didn't realize that.  I told her about my fall and how my back hurt too much to walk the long walk down to the Memory Care unit (the back is fine now, by the way) and she was solicitous, which interrupted any feelings she might have had about my not being there in such a long time.

The visit was back to the usual discussion of age, how old she is, she can't be that old, etc. She asked me what I had been doing with "Mom" lately.  She misses her mother so much and occasionally thinks she sees her, though it's not in a hallucination sort of way, but more when she is asleep.  Of all the relatives who have gone before her, her mother is the one she most wants to see again.  She never mentions her father.

She talked about how many activities there were to do at Atria and smugly and proudly let me know that she never participated in ANY of them.  That always makes me sad, knowing how many opportunities she missed since she moved to Atria.  She wouldn't even go to the theater to see a movie, she was so uncomfortable, afraid she would do something wrong--and this was when she had it all together mentally!

I remember how involved she was in so many things when she lived alone.  Her calendar had an activity for every day of the week, it seemed.  Lunches, fashion shows, meetings, volunteer work.  But she lived in the mobile home park for a long time -- maybe 20 years? -- and never participated in any of the many activities there and refused to get to know her neighbors, so maybe this isn't so much a dementia/Alzheimers thing as it is a personality thing.  Still it seems a shame that she never took advantage of anything she was paying big bucks to have available to her!

A Good Day

Jeri called late this afternoon and at the conclusion of our conversation she said "you sound less stressed than usual."

I had not been to Atria in 4 days, so I decided to take my mother out to lunch. When I got to her apartment, she was dressed, but asleep on top of the covers of her bed.  I was in no hurry and we had no deadlines, so I just sat and read until she woke up.  She woke up more awake than anybody I've ever seen 10 seconds after they wake up!  When I suggested lunch, she said she was so tired and I asked if she preferred not to go, but she got into it and started to get excited about going out to lunch.  I gave her a choice of Chinese food or Denny's, and she chose Denny's.

On the way to Atria, I had passed one of my favorite trees, which has only half changed color so far, but I really thought it was cool looking.

So though Denny's was in the opposite direction, I drove around Davis so I could pass by this tree and she loved it.  I put on my 40s playlist and she sang every word to every song all the way to the restaurant.

At Denny's they are having new holiday meals, and so I decided to have cranberry-orange pancakes and she said she would too.  They came with eggs, hash browns and bacon.  My mother looked at the plate and I could see that she was overwhelmed by the amount of food.  I kept assuring her that she didn't have to eat it all.

By the end of the meal, she had eaten more than I had and was considering ordering a strawberry shake, but we decided not to get one.

On the way to Woodland, we had passed a place that is in the process of putting together their pumpkin patch.  Right now it's just a big empty field, but the pumpkin and the dinosaur attacking it were kind of interesting, so I got off the freeway and drove around so that we could see it closer and I could take a photo.

When we got back to Atria I took advantage of the front desk's offer to have someone come from the memory unit to take her back to her apartment so I didn't have to walk all the way to the back of the building.  I was very happy to turn her over to them, so I could get to the store to buy dinner fixings.

The whole day, including my afternoon nap, was just so pleasant that I'm not surprised I didn't sound stressed to Jeri.

Alice

I met Alice this week.

Alice is the UCD student who is partnered with my mother, to be her "buddy" and establish a relationship with her.  She will visit her every Wednesday, she tells me (a day of the week I don't have to feel guilty about staying home!)

She's a lovely girl, in her second year at the University.  I can't remember what she said is her major, but picked up on her brother, who is looking at UC Santa Barbara (where Jeri graduated) and Cal Poly (where Tom graduated).  I recommended both schools highly, Santa Barbara over Cal Poly because he thinks he might like to major in theater.

We tried to talk to include my mother who was lost, of course.  Turns out Alice is a theater fan and we both like the same shows, which really left my mother in the dust while we talked about shows and songs and her other brother who is doing theater in San Diego.

I guess Alice sat with us for about 45 minutes until time for her to leave.  I was so pleased to have her there because she got my mother talking animatedly, and when she left, the two of us had little to say to each other again.  

We were sitting at the end of the hall, the opposite end from where she lives and I made some comment about her apartment being at the other end of the hall.  I had to tell that to her about three times and she finally shook her head and said "Well, I'm going to have to think about that because I can't understand a word you're saying."

I think Alice will be good for her.

Here we go again

But at 10 this morning, I had a call from Atria letting me know my mother had been unresponsive when they tried to wake her up and they were sending her to the emergency room.  While the initial reaction is to wonder "is this the time?" in my heart of hearts I knew how it was going to happen, and I was not wrong

When I got to the ER, she was still unconscious and they were trying to wake her, to no avail.  Her eye lids were blinking very quickly, but her eyes never opened.  Everybody tried to wake her up, but unsuccessfully.

They cut her out of her shirt because she wasn't able to help them get her undressed.  They put on diapers, but first took a urine sample so they could test for a UTI.  She slept through it all.

The nurses left and I saw her eyes flicker, like they had been, but also to open a tiny bit, so I got up and talked to her and she started to come alive.  I asked if she knew who I was and she slowly nodded.

About then Ebonee came in to take blood.  She had about the very best dreadlocks that I've seen.  I'm sorry I didn't take a picture from the front because it was truly beautiful.

She had lots of blood to collect and fortunately she had a great sense of humor, so she got my mother chatting and laughing.  She was now coming back to whatever her normal is, which was a relief.

Then we played the hurry up and wait game, waiting for time for her to be taken for EKG, CT-scan, and chest x-ray.  

 

I think it is not an exaggeration to say I had to explain to her 100 times where we were and why we were there, after which she always said she didn't want to be in the hospital and why hadn't I told them to just leave her alone.  And then she would ask again where we were and why we were there.

They finally took her off for her various scans and after she returned we waited again ("where are we and why are we here?  I can't understand a thing you say...")

Finally the x-ray guy came back with the report that all was fine, so we waited for the doctor to give her the all-clear.  And waited and waited and waited.  He finally came and told me what I knew he would--they can find no sign of anything.  She has no UTI, her blood sugar was fine, there was no sign of stroke, lungs are clear, etc., etc., etc.  He mentioned her going home by ambulance, but I told him I would drive her.

So we waited and waited and waited for the nurse to disconnect her from all the machines.  She does not wait patiently and asked me many times what we were waiting for. I finally had to go and get someone, because they were waiting for the ambulance.  They got her dressed, and gave me a gown to replace the shirt they had to cut off, and while I went to get the car, they got her into a wheelchair and outside.

Naturally there was no parking to be had at Atria, so I parked illegally and told the girl at the desk that I was taking her to memory care and asked if I could borrow a wheelchair, since I didn't want to walk her through the building in a hospital gown.  

 

A woman we know in town whose mother just moved into Atria was happy to see me and started chatting, but I had my mother who kept trying to get out of the car, and the wheelchair that was not arriving and I was probably kind of rude to her and her mother.

Finally a new desk person called again for a wheelchair and then two of them came.  We got her into one and someone pushed her while I followed along behind as the beast of burden, carrying a bag with her stuff (mostly her sheets), pillow, doctor's orders, my cane and my purse.  

 

We got her to her apartment, which she has never seen before and didn't know where she is.  Most of the aides came to see her and I realized that though this was her fourth trip to the hospital, she had never had one of her spells in the memory unit so they were much more worried about her than I was (though one of these days she's going to surprise me and die during one of these "normal tests" trips to the ER)

I was going to leave her when they took her to the dining room to get some food, since she had not eaten anything yet, but she was terrified, said she had never been there before and didn't know anybody.  I tried to explain to her that someone would help her get back to her apartment, but she didn't know she had an apartment.

About then there was a blackout.  All electricity went out and an alarm started to ring and the aides were looking worried.  Automatic doors slammed shut.  Just what my mother needed!  It didn't last more than 5 minutes, but when it was over, all the aides were off somewhere discussing it, and nobody was around for me to ask to take my mother back to her apartment. She started crying and asked what she should do if the two of us got separated.

I finally found someone to take her back to her apartment and I got the heck out of there ASAP.  My patience had about reached its breaking point.  I told Walt she was worse than a toddler and I just had to get out of there.

And I do feel guilty about that.  But at least I left her in good hands.  I feel guilty that I forgot to kiss her goodbye and that guilt will probably bite me in the butt and she'll die tonight and I'll have to live with my last act being to ignore her when she felt alone, lost and frightened.

I am a bad person.

Bad Day

When I got to her apartment, she was in bed and seemed to be sound asleep.  I poured nuts into the bowl and then sat down for a bit to read and see if she woke up.  She woke up, actually, with a start, sat up and couldn't find me when I told her hello (she couldn't figure out she should look behind her).

It was one of her bad days.  I have seen her more agitated, so it wasn't as bad as it could be, but she said all of her insides were shaking, she didn't want to leave the apartment because she was afraid she'd do something wrong, and things just kept spinning around and around in her head.  (She's been saying this, off and on, for years, so it was nothing new.)

She said people would tell her to do one thing and then someone else would tell her to do something else and she didn't know what to do at all.  Well, of course, nobody was telling her to do anything, but in her head  they were.

She finally decided what she had to do was to sit and be quiet and see if she could get the shaking to stop.

I tried to get her to try some deep breathing, but didn't really think that would work.  She was able to follow the direction to take a long slow breath in and relax but she said that when she took the deep breath all the things whirling around in her head got worse.

I didn't want to leave her, but couldn't do anything to help her.  She finally decided that maybe if she got into bed and slept things would be better.  As it was after 4:30, I decided I would leave and let the aids know to check on her.

When I kissed her goodbye she asked when I would be back.  I didn't think she could handle "in 6 days" so I told her "a couple of days" and she got this look of panic on her face and asked what she was going to do without me.  Just the guilt I needed. 

I talked with one of the aids and then I sent an e-mail to Jen, the head of the memory care unit, to let her know how things were, that I would be gone for 6 days, that Ned would stop by to see her, and if need be, they could call my cell phone and I could be home in about 9 hours.

I'm hoping they won't need to call me.  And I can't even call HER because if she's still agitated, I don't want to make it worse.

Dammit.

Getting Lost

I went to Atria earlier in the day.  She was in the community room at a sing-along  She now greets me as if I am along lost relative whom she has not seen years.  She usually gives a gasp and then says "When did YOU get here?  I didn't know you were coming."  I think in that moment she thinks I'm one of her sisters, but as we talk she finally seems to know I'm her daughter (though at one point she asked me "What am I?  Your sister? your brother? your mother?"  

She complimented me on the shirt I was wearing, which has a design with zebras on it.  When I pointed that out she looked confused and when I said they were horses with stripes, she told me I was the smart one and she didn't know about things like that.

She went to the bathroom while I was there and got lost coming out of the room, taking the wrong door and ending up in the hallway, barefoot.  One of the aides brought her back, surprised to find me there. My mother had already forgotten that I was waiting for her.

But I stayed an hour and, all things considered, it was a decent visit  It's been a long time since she's had either an anxiety attack or has fainted and I'm very pleased about that.

The Long Goodbye

I went to Atria today.  My mother was thrilled because she hasn't seen me in a year.

Comments like this make me feel more comfortable going less and less often because to her it's either today or a year ago or a year from now. 

I couldn't find her when I got to the memory unit and one of the kind aides said she would go and find her for me.

To my amazement she was outside!!!!!!  This may be the first time she has gone out of the building on her own (of course, I don't know if someone took her outside or not).  Today was the first really comfortable day we've had (75⁰) and a really lovely day, so I'm glad she was able to get out and enjoy it.

When the aide brought her in to her apartment, she didn't know me, but quickly figured out who I was, but I don't know if she thought I was her daughter or her sister.  Possibly both during the hour I was there.  At one point she talked about Walt ("what's the name of that guy you're married to?") and our kids, but then at one point she said "Mom is doing pretty good these days, isn't she?" and she I looked perplexed she said "Mom.  Our Mother" so I think at that moment, she thought I was her sister.  She also asked how Peach's mother Marge was (Marge died many years ago).

Steve Schalchlin's friend wrote a song about Alzheimers called "The Long Goodbye" and that's what it is...watching little bits and pieces fade away slowly.

If there is anything to be thankful for it's that she hasn't a clue what is happening in the world.  In fact, when I told her abut the Mexico earthquake she asked "was she working at the time?"  I never expected her to understand about the earthquake, but sometimes it's good to have something other than her age, and the weather to talk about, even if she doesn't understand it.

Fulll Day

The phone woke me up shortly after 5. It was Atria saying my mother was in great pain in her right arm and they could not calm her down. I was at Atria by 5:30.

She was miserable and periodically screaming out in pain. She had a blood bruise on her arm and I said I would call Kaiser, which I did. They couldn't see her until 2 but we had an appointment with the social worker for her long term care insurance at 3 and she needed to see the doctor in the morning.

There was a lot of discussion and ultimately I took her to the emergency room.  Making a very long story short, the doctor found a tiny hairline fracture which they put a splint on.
 

This only took ~3 hrs. I was going to take her to breakfast but she wouldn't be able to use utensils so I just stopped at Starbucks for coffee and a muffin.

We got back to Atria and I left her and came home to sleep a little. I was totally exhausted. I woke up a couple of hours later when my guru called to let me know the computer was fixed, but I knew I didn't have time to get it.

Back to Atria. She was asleep and no sign of her splint which she had removed. I let her sleep until the insurance rep arrived.  I found her splint and put it back on her but she doesn't know what it's for and I'm sure she finally took it off again as soon as I left.

The exam took two hours and if there was any question of the company about her Alzheimers there is no longer any question!  The insurance woman could not have been nicer and it was heartbreaking to watch her trying to answer questions like "what is your name?"

I Miss the Dining Room

After I left my mother yesterday, I spent a little time sitting in the little alcove opposite the main dining room and just watched people entering...and eating.  And I got a little teary, realizing how much I miss the dining room.

I used to have lunch with her once a week and while I had lots of complaints about things, in comparison to the memory unit, it was lovely.  I have only eaten in the memory unit a couple of times.  There is no choice of food.  It comes from the same dining room, but arrives luke warm.  There is no pitcher of water on the table.  You have to ask for water and the aides are usually busy, so I don't.  

And then there are the other diners.  There are only about 30 in the memory unit, so the dining room is quite small.

and you don't hear the hum of voices the way you do in the main dining room.  The first table there, on the lower right, usually is filled with four women who are far along in their dementia.  One of them keeps her head on the table until her food comes, another is gap-jawed and needs help with eating, the other two are just a lot more out of it than my mother.

When I have eaten there with my mother she spends most of  the meal asking where we are what we are waiting for, and how she is going to find her way back to her room.

I compared that to the folks in the main dining room -- people like Cameron, who is younger than I am and wheelchair bound.  She has her little clique of people around her and they always sit at the same table and have in-depth conversations about lots of things.  I think Cameron told me she was in engineering...I could be wrong....but I often thought about how interesting it would have been to sit at Cameron's table.  We often sat with Margaret, a lovely little white-haired woman with lots of physical problems, which you don't realize until she gets up to go back to her room and walks bent at sharp angle over her walker.  But she is usually is cheery and I've always enjoyed talking with her, especially since she is a Davis native and we both remember the "old days."

There are lots of other familiar faces, many of whom stopped to say hello to my mother or to tell me how special my mother is.  The long-time servers knew her and would chat briefly. There is nobody like that in the memory unit.  They are all trying to figure out where they are and what they are doing and the aides are busy helping people who can't eat unassisted. So I look for reasons not to go to Atria until after lunch.  

There was more than just missing the dining room that had me teary sitting in the little alcove.  My mother often sat there, having coffee and cookies and looking out onto the patio that she loved so much.

We would sit there and chat.  Actually chat about things. She was vague, of course, and increasingly so as her dementia progressed, but we could chat.  People would stop by to say hello.  The people who run Atria always stopped to say hello. Now I don't think they even remember her, since the memory unit is a separate facility that has little to do with the main facility.

When I arrived yesterday, she was sitting in the main room and Ellen deGeneres was on TV and my mother was sitting in a chair asleep.  When I sat down next t her and said hello she didn't open her eyes but said "I hear ya..." I said that I had just arrived and she opened eyes and looked confused.  I asked if she wanted to go to her apartment.  "What will we do there?" she asked.  I said we could visit.  I got up to get someone to open the apartment door for us.  My mother sat in her chair and kept signaling whether or not she should come with me.  She finally did.

When we got into the room she wasn't sure where she was.  We spent  the time talking about how something was wrong and how she didn't know where she was (in other words, the same thing we always talk about)

Her roommate Marge walked in at some point, picked up a bra that was lying on the floor and walked out.  I don't know if it was hers or my mother's.  I decided it didn't matter.  Marge has talked to me a few times -- she uses words, but I have never once understood what she was talking about.  She seems a very unpleasant woman.  The aides tell me that she and my mother are "great friends," which I have never seen and when she left, my mother said "I don't like her."

Finally someone came to get her for dinner.  She asked me if she was dressed all right or if she needed to get dressed up, and wondered if she needed to bring her purse and how she was going to pay for dinner.  When she learned that I was not going to stay for dinner, she was nervous because she wasn't sure she could find her way back to her room afterwards.  When we got to the dining room, I saw there was a seat at the table where Loretta was sitting and I sat her there, but Loretta's dementia is progressing too and I don't know if the two of them talked with each other.  They were both looking off into space when I left.

So the main dining room is not only something I miss for the food and the servers and the other residents, but it represents a time when my mother was more "with it" than she is now. And it makes me think how much I have changed in the past 4 years.  And that is sad too.

Paranoia

I knew that paranoia is often a component of dementia, but had  not seen it until today.

The day started with no sleep.  I absolutely could not get to sleep and only fell asleep for about half an hour or so around 7.  So I was not operating on all cylinders.

I had a dental appointment at 11.  I am one of those weird people who enjoy my appointments.  I like my dental hygienist, Christina, and I enjoy the brief moments to catch up with Cindy, who has been a friend since the 1980s, long before she had her own dental practice.

It was noon when I left the office and I did not want to get to Atria at lunch time, so I did a little shopping first (laying in goodies for Ashley, who moves in tonight to take care of the house and the dogs while we are in Santa Barbara.  This will be the first time they dog sit while their baby is becoming a toddler.  I hope it all works out, since we are not "baby proof" here.)

I got to Atria just as lunch was finished and my mother was sitting at a table laughing with her friend Loretta. The two women have been "friends" for most of the time that my mother has been at Atria.  They love to tease and put each other down.  They remind me of my mother and her friend Paula, in San Rafael.  I was so happy when my other found Loretta.

Of course, they don't have a clue who the other one is.  They don't know each other's name and are at about the same stage of dementia, Loretta perhaps a bit ahead of my mother because she moved into the memory unit a few months before my mother did.

But I enjoyed the "normalcy" of sitting with these two friends laughing with each other, and was glad to see my mother actually laughing with another resident.

When it was time for us to leave the table, I don't know where Loretta went, but my mother and I headed back to her apartment.  She is having what is probably another bout of sciatica and her leg is bothering her.  I was pleased  (and very surprised) to see that she had brought a cane with her to the dining room.

We walked to her room--which she cannot find yet (the big MILDRED on the front door helps!) and she sat down in her chair....and then it started.

It started the way it usually does, with her looking around and saying "something's wrong."  She then said what she often said, that she knows she should be doing something but can't remember what it is.  We even laughed about it, and I told her what I always tell her, that the nice thing about living at Atria is that if there is something she should be doing, the staff will remind her, that they are her memory.

An aid came in to check on her, on her regular rounds.  She and I talked about the leg pain and I explained that she had suffered from sciatica before but had not complained of pain in over a year.  She asked if it was OK with me if she faxes my mother's doctor to ask bout adding Tylenol to her meds.

I watched my mother's face while the aid and I talked.  I could see that she couldn't follow what we were saying and that it bothered her a lot.

After the aid left, she got this weird look on her face and said she just didn't understand what she's done wrong that offended everyone.  She says nobody in the family will talk to her.  When she walks into a room, everyone turns their back on her and whispers about her. and she doesn't know why.

She says nobody calls her to ask her to go out to lunch or dinner and when she calls someone to invite them to do something they just say "I am busy."  She can't figure out what she has done wrong.

Another aid came in.  She was just coming on her shift and was checking in on all of her clients.  A darling girl, with a big smile and rosy cheeks.  She and my mother talked and laughed together and after she left, my mother was gloomy again  "See?" she said, indicating the aid and how she hadn't wanted to talk with her.

Then she pointed at me and said... "I look at your face and I see these thoughts going through your head, how you want to leave and how you don't want to be with me."

Then she went on to say she didn't know what anybody in the family was doing any more and I said that I could tell her something, that Brianna was on a softball team that had just qualified to go to the championships in San Diego.   I thought that might interest her because Brianna is her great granddaughter (though she does note relate to that) and because she herself was a softball champ in high school.

She just looked at me and said "Now why in the world would you tell me that?" and had zero interest in what I was saying.

She had this disconsolate look on her face and just kept trying to figure out what she had done wrong and why nobody liked her any more.  I couldn't leave her like that so I just sat there and listened.  Sometime I tried being in her head and responding to what she was saying and telling her how sad I was that she was being treated so badly.  Other times I tried being in the present and reminding her that all that family (her siblings) were dead and couldn't shun her  ("Yeah, but there are others in the family..") and reminded her that everybody lived at least 100 miles away.  That didn't help.

(Yes, I know the pointlessness of trying to "help" but I hate seeing her so miserable.)

I stayed about 45 minutes trying various things until finally I got her to laugh and come back to normal again.  They I hurried up to leave before she sank back into depression again.  I told her I'd be in Santa Barbara and that I'd see her in a week and she told me to have a great time and seemed as happy as she ever is these days.  At least I didn't feel uncomfortable about leaving her in the depths of depression.

I came home and slept for about 2 hours.  I'm just going to have to put that in the back of my mind while we're away, and realize that she is in good hands and that the aids are taking good care of her...and she can have lunch with Loretta.

Wasted Trip

It had been several months since my cousin had been up to do my mother's nails.  Niecie is a cosmetologist who owns two beauty salons in Marin County and has been keeping my mother's nails in good shape since long before she moved to Atria.  But she's also a very busy person and I think it had been about 6 months since she was last able to come up and my mother had been complaining about her nails for a very long time.

Niecie is such a special person.  Everybody in the family plays lip service to loving my mother, but in all the time she has been at Atria (4 years), nobody has so much as sent her a note.  Somehow telling me how much they love her on Facebook is not quite the same thing as getting in the car and actually coming to see her.  Of course, by now it doesn't matter because she wouldn't know who anybody was anyway, but every time someone tells me how special she is and how much they love her, it irritates me!

I almost made an appointment to have her nails done when I took her to the beauty parlor this week because her toenails were particularly bad (long and curling under), but before I could do that, Niecie called and said she was planning to come up.  Yippee.  The cavalry was on the way!

When I was last at Atria, they told me that a podiatrist would be coming to the memory unit to examine everyone's feet this week and asked if I wanted her to see the doctor.  I told them no, since I knew Niecie would be there.

Niecie called me from Atria this morning to let me know that she was there, but my mother was "too tired" to let her give her a pedicure, even though she has been complaining about how bad her feet are.  So I made arrangements with Atria to have her see the podiatrist, which will cost $40 (since it's not covered by Kaiser) just because she was too tired to sit in a chair and let Niecie work on her feet.

But she wouldn't understand my frustration.

Normalcy

We don't have a lot of "normalcy" around here ... or at least around Atria ... these days.  It's like going  through Alice's rabbit hole when you are let into the memory unit and you never know what to expect.  If I'm lucky, she's in a good mood, which means that we pretty much stare at each other for an hour while she asks me if she lives there and who this or that person is in a picture she indicates...and whether or not her mother is still alive.

If it's like last week, she is in another zone entirely.  You can't convince her that she is not in a situation where everybody hates her because she's done something terrible, but doesn't know what she has done.  (And if I'm very unlucky, I'm to blame for all of her problems.)

If I'm very lucky, she's in a giddy, chatty mood where everything tickles her fancy and we spend a lot of time laughing.

What rarely happens is a "normal" day.  Days when I take her out to lunch are more or less normal, except for the endless questioning about where she is.  But she used to go out to lunch with friends frequently and it's always pleasant to go out to lunch with her.  I wish I could afford to take her out to lunch more often, because I really enjoy it, and she does  too.

Haircut days are also normal day.  She used to have her hair done once a week for years and was good friends with her hairdresser. Hannah.  I last took her to see Hannah a couple of years ago when she needed a permanent.  It cost so much money, I didn't take her back again, since Lucy, the beautician at Atria, does a fine job for much less money.

I'd been putting off making an appointment for her.  She's several weeks past when it should have been done. Her hair has been so long and stringy, hanging in her eyes, often looking fly-away and giving her that "Wicked Witch of the West" look.  I'd only put off making an appointment because either I didn't have my calendar, or it was Lucy's day off and I couldn't reach her.  But today, she finally had an appointment.

She was in good spirits when I got to Atria.  She was napping, but got up right away.  When she opened her eyes, her first word were "Well...I have a sister."  When I told her that no, she had a daughter she came more to life and sat up.

I told her we were going to get her hair done and there was no argument.  She just immediately put on her shoes and was ready to go.

It's always such fun watching her interacting with Lucy.  It's one of those "normal" times.  Other then telling Lucy that people always ask where she gets her hair done (she's thinking of when Hannah used to do it), they chatter away just like the old days.

And in the end, though she never thought she needed a haircut to begin with, she's delighted with how she looks.

We returned to her apartment and she sat down, dazed, and asked if this is where she was going to live from now on.

Normalcy was nice, while it lasted.

She Doesn't Hate Me

Apparently my mother doesn't hate me any more.  This is nice to know.

I got to Atria around noon yesterday, thinking I'd sit at her table and have coffee while she ate lunch, but they told me she had gone back to bed, so I went to her apartment and told her I would take her out to lunch.  She smiled and was happy to see me, though said she hurt "everywhere," including down her legs and under her arm.

I got her up and we went out to the front of Atria.  It was a hot day -- mid 90s -- and I could only find a place to park a block away and didn't want to make her walk that far, so I parked her on a bench by the front door and let the woman at the desk know that I was going to get the car and that she should be aware of my mother in case she wandered off.

But she didn't.  She was still there when I drove up and we both enjoyed the air conditioning blowing in our faces.  

We drove to IHOP, which is very close to Kaiser.  The timing could not have been better.  Her appointment was at 1:50 and we finished lunch at 1:25.

She beamed when she looked around, said it was a nice restaurant and she had no been there before (we've eaten there several times).  It was good to see her smiling, after the horrible visit on Thursday.

Menus overwhelm her, so I usually give her a choice of two things.  This time it was easy because IHOP had its berry-themed menu and I gave her a choice of French toast with berries or crepes with berries.  We both agreed on the French toast.  When it came, she said it was enough for three meals, and I have to admit I can't believe she ate the whole thing!

Her appetite is never as small as she thinks and generally speaking, if you put something in front her she will eat it.

We were in plenty of time for her appointment.  She's not good at waiting because she can never remember where she is and why she's there, and once we are taken to the exam room she can't understand why it is taking so long for the doctor to arrive.

But while waiting, she rhapsodized over the beautiful leaves she could see out the window.  Never knew anybody who loved trees and leaves as much as she does!

The exam went well, again, though her blood pressure was low and she's lost 7 lbs this year so the doctor made some adjustments in her meds.  But she is given a clean bill of health until she is about to turn 99 (she turns 98 in a little over a month).

I can no longer drop her off at Atria and trust she will find her apartment on her own, so I walked her down to the memory unit (apparently I can ask for someone from the memory unit to come and get her, but that doesn't seem right).  I sat in her apartment for a bit, but we were both tired and I was either going to fall asleep in the chair or get up enough energy to get out of the chair and walk back down to the car.

I slept for over 2 hours after I got home.  These days probably take more out of me emotionally than physically, but I do come home absolutely drained.  Now I take a day off and then I take her to get her hair cut at the Atria beauty salon, which is going to be a lot less emotional than a doctor's appointment.

I hate it, I hate it, I hate it!

As much fun as my visit with my mother was on Tuesday was as bad as it was when I went to see her yesterday.  Thursday is the day Jeri wants to call her, and I've promised to be there by 3:30 on Thursday afternoons so make sure my mother is in her room and answering her telephone.

I got there at 3 and she was standing by the common room looking lost and when she saw me she muttered under her breath that she was so disgusted she could hardly speak.  I suggested we go to her room.

When we got to her room the door was locked and I told her to sit on the bench outside the door while I went to get someone to unlock it.  When I came back with an aide, she was walking down the hall and trying to get into someone else's room.

I brought her back to her room and she looked, as she usually does, confused and unsure where she was.

When we sat in our respective chairs, I asked what the problem was.  

It turns out she's disgusted and so sick she wants to throw up.  She's disgusted with how badly "the business" is being run.  How nothing is being done and how "the boss" (a man) doesn't care. 

She hates her room.  I pointed out that she had people to take care of her and she got extremely indignant.  Nobody helps her.  NOBODY had been to see her since she moved in.  And if she tries to talk to someone, they just turn their backs and walk away.  Or they laugh at her.

At one point she said that she was just going to leave and go find another place to live.  I asked her how she was gong to do that and she said she'd just go out and find a place.  I asked her where she was going to look and she said "in those places where you look." (thank God she is in a locked facility and I don't have to worry about her trying to leave)

I texted a note to Jeri that she was bad and that when she called she should be cheery.

In mid-tirade, my mother was so disgusted she said she couldn't stay there any longer and got up and stormed out of the room.  I brought her back and tried to talk to her a bit longer, hoping Jeri would call, but she did. not. want. to. be. there and stormed out again.   (I texted Jeri not to call.)

I followed her down the hall and saw that Jennifer, who is in charge of the memory care unit was in the hall and asked if we could have a meeting, thinking it would placate my mother to talk with "the boss."

We went into Jen's office and my mother was so furious she was unable to find words. When I pointed out that Jen was the boss there, she spat out "and who is YOUR boss?" (because obviously a woman couldn't be the boss) When we tried to get her to say one thing that was upsetting her, she tried to say that she didn't even have a desk, but couldn't find the word for "desk."  Jen asked if she would give her two days to try to make things better for her and suddenly she bent over, grabbed her stomach, and said she had to leave or she was going to "urp."

We returned to the room and I spent the next hour or so trying to calm her down, but she was shaking, she was so livid.  Somehow it became all my fault for not fixing things.  But she couldn't tell me what needed to be fixed.

She finally said she was just going to go to Washington and start her own company, but she couldn't say what kind of a business it was going to be or how she was going to get there.  Maybe she'd go to New York instead.

Every time she told me it was my fault for not fixing the business, I told her I didn't work for the business and that I worked for myself.  "Well, who do YOU answer to?" she asked, belligerently.  I told her I only had to answer to myself, but that never registered and she was still convinced that I worked for "the business."

When I finally told her I thought I should leave, she told me not to come back because if she saw me on her porch she would not answer the door.

I finally got up and delivered a message from her good friend Jeff, whom she knew from Hospice.  Jeff is dying of cancer and so she has not seen him, but I had just received a note asking me to give her a kiss on the forehead for him and tell her he loves her.  So even though she was so angry with me for not fixing "the business," I kissed her from Jeff and told her that he loves her.  She said she didn't remember him.  

I finally got up and told her I was leaving and she said that she had decided she would just disappear for a month, so not to come back.

The thing I hate most about this damn disease is that you never know who you are going to find when you arrive.  Will it be the good natured woman who loved life and loved where she lives, as was the woman I met on Tuesday, or the harridan who thinks everyone is incompetent and that she must leave and start her own company?

Lord help me, I don't know who I am going to find when I go to see her tomorrow.  I think I'll bring candy....

Giggles

It would be so nice if every visit with my mother was like today.

When I arrived, she was in bed.  I took advantage of that fact to sneak in the new package of Depends that I brought so I didn't have to answer her questions.  She talked with me from bed, but didn't seem in the least interested in getting up.  Then, suddenly, she realized I was there and sat up, wondering how long I'd been there.

She finally got up and sat in her chair and told me how beautiful I was.  Then, for the next hour she was just .... silly.  Everything she said, whether it made sense or not, made her laugh.  At one point she kind of shook her head and said "Do you know what I was just thinking?"

Then she explained that she had this overwhelming desire to pick me up and just hold me.  I laughed and told her that I didn't think she could pick me up, and she realized that, but her need to put her arms around me and hold me was so strong that I got up and hugged her.

It's nice that lately she recognizes Fred in photos all the time, but sad that she always talks about how she wishes he could be with her.  Part of the time she knew he was dead, other times she just thought was was "somewhere else" and wondered if he would ever come back.

It was interesting to try to follow her thought processes, which seemed to be bouncing all over the place, but she was always happy, reaffirmed that she loves life and wants to go on living.  I did not leave in my usual state of depression.

Family Ties

I confused my mother yesterday.  She had been looking at the pictures of her family on the wall and not so much reminiscing (since she doesn't have firm memories any more), but saying how lucky she had been to have such a good family, how much fun they had together, etc.

She looked at me and said, "didn't we?"  I said "Well, I wasn't there, so  don't know."

"You weren't there?  Why weren't you there?"

"I wasn't born yet!"

She was confused and she asked me how I got there.  I tried to talk around the subject but finally said "you had sex with my father."

She looked shocked.  "I had sex with your father???  How could I ever have sex with your father???"  

I finally realized she didn't know who I was.  I asked if she knew who I was and she said.  "Of course.  You're my sister."  

I told her that no, I was her daughter.  She thought about that for awhile and finally said "I'm going to have to think about that.  I don't understand a word of what you're saying."

Sigh.

Fantasy Land

I had a call from Atria yesterday that my mother was out of something. I could not understand what word the woman was saying, but decided it must have been her Depends, which it was.  I bought two packages and restocked the larder.

My mother was in good spirits and told me that she and a friend had taken a long walk that morning, all the way downtown, and that she was tired when she got back.  I did not point out that she could not get out of the building and didn't know where "downtown" is.

When I left, she was trying to decide what she was going to cook for dinner.

Fantasy Land

I had a call from Atria yesterday that my mother was out of something. I could not understand what word the woman was saying, but decided it must have been her Depends, which it was.  I bought two packages and restocked the larder.

My mother was in good spirits and told me that she and a friend had taken a long walk that morning, all the way downtown, and that she was tired when she got back.  I did not point out that she could not get out of the building and didn't know where "downtown" is.

When I left, she was trying to decide what she was going to cook for dinner.

Adjusting

My mother and I spent an hour looking at each other yesterday, with occasional brief conversation about how beautiful her floral arrangements were and who is that strange man in the picture on her dresser (her husband), but really there was absolutely nothing to talk about.  She wants to know what I'm doing that's exciting and, in truth there is nothing on my calendar this week, so I had nothing to tell her.

I'm going to have to get better about making up exciting stories for her, though I did tell her that I have an upcoming radio interview about the summer season in Sacramento and her response to that was "Oh?  Aren't those flowers beautiful?"

I would have suggested that we go for a walk in the garden or something but (a) it was hot out and (b) she was barefoot, so I figured that could be a suggestion for a later, cooler date.

But actually, I am encouraged to see that the move to memory care seems to have been good for her.  With increased contact by the staff, she can't just lie in her bed all day any more and that seems to be a good thing.  She's not exactly a social butterfly, but I she does seem brighter these days.

Her laundry hamper is still missing.  They told me to label it (it's rather unique looking so I'm not sure why it needs to be labeled), but by the time I got back with a Sharpie, it had disappeared and I have not seen it since.  But I also didn't see any dirty laundry lying around.  

When I left her, I met with Jen, who is in charge of memory care (technically it's called "life guidance," which seems a strange euphemism).  She actually acknowledged having received my email (be still my heart) and she asked me if I had been given a copy of the assessment on my mother done by "the other side" before she moved in (no).  She gave me a copy which I read before seeing my mother.  I had a few question about it, so we met after my visit and I found her delightfully forthcoming.  She also gave me the web address for a SurveyMonkey questionnaire about my mother's background and her likes and dislikes.  Presumably this will help them set up some sort of a program for her.

But my big question was about laundry and she told me that the staff does the laundry, so I'm off the hook after 4 years.  I am not sad about that.

I let her know where I have put her supply of Depends and pee pads and mentioned the odd places where I'd found the used ones in her old apartment when we were cleaning up (the oven?).  Jen said she found them stuffed between the mattresses in her new place.

The other interesting thing was that in her old apartment she had necklaces that she laid out on her dresser and kept fiddling with them to make sure they were in a straight line.  When I decided to take her jewelry box home to prevent pilferage, I left a small box and a few things in it and I noticed that box is now opened and two more necklaces are now laid out on top of the dresser.  She doesn't wear them, she just arranges them.  I wish I knew what that was about.

The Big Move

The best part of yesterday was when my mother, sitting in her chair, looking out the window of her new apartment, found a tree that was particularly beautiful.  I knew it was going to be OK.

 

We had  long day and I'm sure my mother is waking up this morning not having a clue where she is, but I hope at least she can find the bathroom.

Lunch

I told Walt when I got home that it is getting more and more difficult to find something to talk with her about.  She asks endlessly what my plans are either for the rest of the day or for the rest of my life.  I try to find something that I'm doing that she can follow, but she seems to be having difficulty following even simple sentences and often just waves me off with "I can't understand a thing you're saying."  

I used to try to make her laugh and tried that today.  She was commenting on the brown age spots on her arm again and how they made her look old and that they were ugly and she wanted to just chop her arm off.  About then, her nose began to itch, as it seems to do constantly, and she took her napkin and rubbed her nose with it.  I told her that if she chopped her arm off she would not be able to scratch her nose when it itched.  That was entirely too complicated for her to follow.  A couple of months ago we would have had a nice giggle over that.

We did talk a little about politics.  She asked me how the world was doing and I said "terrible" and then gave her a very brief outline of what is going on (she has never heard of Donald Trump, though she read the newspaper every day).  She kept demanding to know what I was going to do to fix things.

But we had a nice lunch and I told Piyush, the server from Nepal, who is my favorite (she always called the women "mama" because she can't remember everyone's name) that she would be moving to memory care next week and she was very sad, because she would probably not see her again.  I was so happy to take a picture of the two of them.  I've printed off a copy and will get it to Piyush when I am at Atria tomorrow or the next day.

Mothers Day

It was just 11 a.m. when we finished and I decided that was too early to go to Atria, so we waited until 1 and then went to visit my mother . Each holiday that we share together, I wonder if it's going to be the last one.  Whether she is here next year or not, it really was the last video in this apartment.

 

Walt came with me this time and he got to see her when she is good, but making no sense in whatever she talks about.  She did spend a lot of time talking about the trees outside and that made her smile.

 

Since conversation was all but impossible, we didn't stay the full hour, but I did snap pictures of the furniture we want to donate because Habitat for Humanity is interested but wanted to see what we had to share.  I have to go back tomorrow anyway to pick up laundry, so I will visit more then.

A Rose is a Rose

Today Ned and I took my mother to the McKinley Park rose garden in Sacramento.  Ned has been wanting to do this for months but had to wait for the roses to bloom...and then when they reached their peak, he was on the road, driving from Houston to Sacramento.  So the roses are slightly past peak, but still an amazing, dazzling display of color.

 

We almost didn't make it.  When I went to Atria she was asleep and didn't think she could stand up.  I became Ned or Jeri and jollied her to sitting, then gave her coffee, which woke her up a bit.  She got emotional when she asked "where's Mom?" and I had to tell her that her mother had been dead for 60 years.  She was sad that she didn't even know that.

But eventually I got her out into the car, not having a clue where she was or where she was going, but by the time we got to the park near Ned's house, she was a bit more with it.  Ned, bless him, met the car, got us out right across the street from the entrance to the park and then took the car and parked it, so we would not have to walk far.

Ned was such a good guy.  He had packed a lunch for us and thought of everything.  He bought white balloon bread, which he remembered my mother always made her sandwiches on when she made lunch for him as a kid.  He went and found olives because my mother had always said "it's not a party without olives."

He made a delicious fruit salad and he packed beverages -- wine for himself and his grandmother and water for me.

We were at a bench in the shade, just outside of the garden itself and my mother kept exclaiming over and over about how beautiful the flowers (and trees!) were.

I left the two of them sitting there and I went off to wander through the garden and take some photos.

 

Eventually, my mother was getting cold so they joined me in the garden and we wandered around looking at all the roses.  My mother especially seemed to like the huge bushes of white roses.  In fact, whenever we were talking about anything, she would interrupt to say "aren't those white roses beautiful?"

It was finally time to leave -- I needed to get the car home for Walt, who was going to San Francisco that night.  Ned went and got the car for us and parked it in "movie star parking" (directly opposite the entrance to the garden--Thank you, Gilbert) and we said our goodbyes.

Instead of getting on the freeway, knowing how much my mother loves trees and knowing that Sacramento is officially a "Tree City," I drove through town and, not surprisingly, she just loved looking at all the trees.

I dropped her off at Atria and while she didn't know where she was going, I knew she would be able to find her apartment (I won't be able to do that after she moves next week) and I came home to nap for a couple of hours, since I'd had so little sleep the night before.

While still vague and demented, she was so much better at the end of our adventure than she was when she woke up, that I felt good about the trip and am encouraged to think about the possibility of her having more social interaction with folks in the memory care unit, which can only be good for her.