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.