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.