Journey Through Dementia

Journey Through Dementia

Friday, August 18, 2017

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?"

Tuesday, August 1, 2017

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.

Saturday, July 29, 2017

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.

Tuesday, July 25, 2017

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.

Thursday, July 20, 2017

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.

Tuesday, July 18, 2017

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.

Saturday, July 15, 2017

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....