Journey Through Dementia

Journey Through Dementia

Tuesday, October 25, 2016


I had not gone to Atria for a couple of days.  She doesn't notice any more, so I don't push myself as much any more, which is lovely.  It means that when I do go, I enjoy it more.  Usually.  And it seems that every visit is different from every other one.

I had thought of going for lunch, but got an email from the entertainment editor of the Sacramento paper asking where my "stage pick" article was for the upcoming Sound of Music.  I had completely forgotten to write one, so I did that first, and by then it was too late for lunch, so I waited around until 1:30 and then went to Atria.

It's always a good sign when her newspaper has been taken in.  That means she's up and functioning.
Only she wasn't.  She was awake, but still sitting on her bed reading.  There was no walker in the apartment and no sign of any food.  She was wearing her pajama tops and her underpants.  She asked what I was doing there and I told her I had come to visit and asked if she wanted to sit there on the bed or if she wanted to go into the living room.

She stood up and I assumed she would get dressed and join me in the living room. She joined me, but she didn't get dressed, just sat there in her pajamas and underwear.

We talked for awhile and an aid came in with her lunch on a tray (her bill, which I received recently, shows that she has discovered room service and she seems to be eating in her room a lot).  She had a memory retention of about 10 seconds yesterday.  Every tie she glanced at the tray, she didn't know what it was or where it had come from. 

There were men working out in the courtyard, as they have been for months.  They are finally getting closer to finish, but she always thinks they are just there for the day.  She told me that they had put in a new pathway yesterday (they actually did it two years ago)

The men came up on her patio to begin painting and there she sits in her underwear.  I shut the curtains and suggested she really should go and get dressed, so she got up, went into her bedroom, and came out tugging on a blouse, which she was trying to pull on over her pajamas.  Then she sat down, again still in her underwear.  I asked why she didn't put on some pants.  She said she didn't have any and covered her bare legs with a blanket.

I went and got a pair of slacks for her and she laid them on top of her legs, hanging down over her knees and asked if that's what I wanted or if she should also cover her legs with the blanket.
I told her I wanted her to put her legs in the pants, which she finally did.

The food tray had a plate with a hamburger on it, and two covered cups, one with coffee and one with soup. Each time she looked at at the tray she wondered where it had come from and asked what was in the cups.  She opened each one and sniffed one.  She didn't want the coffee because it was black.  She would cover both cups up again, look away, then look back and open them up again to see what was inside.  She did this several times.  

She did finish the hamburger and took the plate out to the kitchen, then later walked out in the kitchen to ask who had put the plate there.

As for our conversation, I couldn't get her into talking about the past today.  She has completely forgotten about her husband Fred, which always hurts my heart because she loved him so much but now her husband memories are mostly about my father.

It was a day when she wanted to know if I was going dancing.  My god how many times did she ask me if I was going dancing and why I was not. She couldn't seem to comprehend  that the last time I was dancing was 13 years ago, at Tom and Laurel's wedding (she didn't remember who Tom was).

That's kind of how the whole visit went.  She was feeling some discomfort in her leg but she has stopped acting like she's in agony, so I assume that the pain med is working, though I think one of the effects of the med is this new mental state of hers. It makes visits more pleasant, if....weird.

Like I said, you no longer know what to expect when you open that apartment door. But the good thing is that she now seems happy more than she seems unhappy and that is a very pleasant change.  But who knows how long that is going to last.

I feel uncomfortable going of this coming weekend to Santa Barbara, but Walt will come and visit her and Ned will come and visit her, and knowing that aids from Atria visit her several times a day is very, very comforting. and, in truth being somewhere where I can't go to visit her will be really nice for a few days.

Yesterday was Tom and Laurel's 13th anniversary, which is difficult to believe that it has been that long.  I told them I will take them out to dinner, if we can find time when I am there this weekend. I am very eager to see the girls again.

Monday, October 17, 2016


This has been a good week for my mother. (Isn't it nice to read that for a change?)

I think the medication is finally starting to kick in.  She still seems to have pain when she tries to get up, but she doesn't complain or seem to be suffering most of the time.  And it may be the medication that is making her loopy. We have had long conversations lately, all of them kind of fun because she makes no sense whatever.  Sometimes she knows who I am, sometimes she thinks I'm her sister.  I think she recognizes me and then she'll say something like "how is Mom?" when I will stop and ask her if she knows my name and she doesn't, thpugh she recognizes that I'm family and she loves me.

She doesn't talk gibberish, but she talks nonsense, asking questions or making observations that make no sense whatever, but she believes them and it's kind of fun to go along with her.  I just follow along with whatever she says, asking question about how she'd do this or that, what she wants to move, etc.  We often laugh when she can't come up with an answer.

One of the best things I ever did was putting her into the assisted living program.  She wasn't ready for it (and would not have qualified for long term care insurance payments) if I had done it earlier, but now that she is on, there are people in and out of her apartment all day long, checking on this or that, giving her meds, etc. She has always been a social person and now she has someone to talk to several times a day.

Not only that, but I know she is eating regularly and that she's getting her meds on a regular schedule. AND, what may be even ore important, knowing that she is getting attention, I don't feel the need to go and visit her every day and consequently I enjoy going to Atria more than I did when I felt I had to be there (almost) every day.

I don't know how long this situation is going to last, but I'm certainly enjoying it right now.

Saturday, October 15, 2016


There was no walker in my mother's apartment today, so I'm not sure what the status of the walker is. 

I'm leaving he whole walker thing up to Atria.  I won't even mention the word "walker." She was wearing a blouse I have not seen her wear since she moved to Atria 3+ years ago. She has been living in three different blouses for the past 2 years at least, while her closet is filled with clothes she does not believe are hers.  So I'm not sure where this "new" blouse came from, but it was nice to see.
Her medication must be working because while she mentions pain, it's not nearly what it has been for the past month.  I think I'm going to cancel her physical therapy appointment for next week, depending on how it goes in the next few days.

It rained today and every time she looked out the window she wondered where the water on her patio came from, and each time she was surprised that it had rained.

Two of the aids came in to help her look for her keys which, apparently were lost again.  They were going to come back later, so I went in and checked her purse, which she keeps in a different drawer every time I look for it.  And they were there.  I really wonder if she takes her purse to meals or if she just puts the keys away in her purse.  It's a mystery.

I went through a big stack of mail that has been bothering her.  It's mostly junk mail but she doesn't want me to throw it away until she has "gone through it."  However, I did manage to let her let me throw away Xfinity ads for computer bundling (since she doesn't have a computer) and requests from a few charitable organizations for holiday donations.  The rest I told her I would take home to take care of, so we eliminate that stack that was bothering her.  That just left the rest of her house that is bothering her.

I'll tell ya, though, I'm sure glad we have health insurance.  Some of the things in the stack were notices from Kaiser about the bills they paid for her 2 hour trip to the Emergency Room last month. Kaiser has no ER in Davis and the nearest one is 20 miles away, so they OKd her treatment at the local hospital.  Her bill for the hospital portion came to more than $9,000 and there were 2 or 3 other bills, one for the doctor and probably one for the lab work so the total cost for 2 hours in the emergency room was about $10,000.  Her cost? a $50 co-pay.  It was a very graphic reminder that without health insurance, one trip to the emergency room could wipe you out completely.

Thursday, October 13, 2016

Brunch with Ned

I met Ned at Atria this morning.  He had brought a watermelon and coffee cake for us to share with my mother.

I was pleased when we got to her apartment to see that the newspaper had been picked up again. When we went in, she wasn't there.

Ned decided to check the dining room, and left me in the apartment with his dog, Bouncer, the whiner.  Bouncer spent most of the time (15-20 minutes) Ned was gone (he called me from the dining room and said they were finishing up there) standing at the door whining.

They arrived back at the apartment, my mother once again pushing her walker.  ("Is this my apartment?" as she sat down and looked blankly around the room.  I wish she could learn to recognize where she has lived for the past 3+ years.)

We had a nice visit, though most of the time she didn't make sense and when Ned and I talked, she usually didn't understand our words (but laughed about it).  "You know, I see you both speaking but I can't understand a single word you are saying."

But after the blow up earlier this week, it's been so nice to have three really positive days.  When she is good, she is very, very good...when she is bad, she is horrid.   And it's nice that Ned often brings out the best in her because Ned will not tolerate anything less than positive.

Tuesday, October 11, 2016

What a Difference a Day Makes

Needless to say, I was nervous going to Atria today.  But I girded my loins and headed off for lunch.  Sadly, there was no parking anywhere within 3 blocks, so I decided I didn't have to have lunch; I would go later.

At 1;30, I tried again and managed to find a spot in the parking lot.  I had butterflies in my stomach, surprisingly, walking down the hall, after her explosion yesterday. I was pretty sure she'd be OK< but you never know with this damn disease. I saw her newspaper had been taken in, so figured she was up.  I let myself in.  She was out of bed and dressed, but down again, napping on the couch.  The big surprise was seeing a walker in her apartment. In the past she has resisted even having it inside.  I decided not to mention it.

Rather than waking her up, I had planned ahead and had brought my book and just settled in to read until she woke up.  

I guess I read for about 15 minutes when two aids knocked on the door.  Their shift was ending and they wanted to know if she wanted to go to lunch (I thought it odd they hadn't asked her before, but whatever)

They got her up and sitting in the walker before she actually saw me.  Her face lit up and she said she was thrilled to see me.  "I haven't seen you in such a long time," she exclaimed, a big smile on her face.

The four of us started for the dining room. and unhesitatingly, she pushed the walker without a comment.  The aids left us in the dining room and I was helping her with the menu.  She was still glowing at "finally" seeing me.  When she asked "how's Mom?" I realized she didn't have a clue who I was.  I asked her if she knew who I was and then she looked confused.  I finally told her who I was.  Then she kind of remembered.  I asked if she knew who she was and she said "Of course I do."  I asked what her name was and she didn't know.  When I told her it was Mildred she made a face and said that was a silly name.  About that time, I remembered I had a little digital tape recorder with me and I started it and put it on the table.  I've been meaning to tape a conversation for some time now.  This was the PERFECT day to do this.  She never noticed it was there.

When I turned away to look at the menu for her and then turned back, she had passed out again, her head resting on the table.  The server asked if I wanted him to call an aid and I told him no.  I got her awake again and, as usual, she awoke with a start and had to orient herself as to where she was.
The strange thing was that she wasn't upset or anxious, but it was as if most of her brain had been wiped almost clean.  She didn't remember anything. About anything.  It didn't bother her, like it usually does, but she asked a lot of questions and I kept filling her in on parts of her life.  Every so often she would marvel that the brain is so strange that it won't let you remember things.

She never remembers that she has great grandchildren, but today she didn't even remember grandchildren (and she always remembers them).  The names Tom, Ned and Jeri were familiar to her, but she couldn't picture them. I found pictures in my cell phone, but that didn't help.

All things considered, though, it was one of the most pleasant lunches I've had with her in a long time.

At one point I missed Peach and Kathy so much.  We were talking about her siblings and she asked me if she had any.  I told her she had six sisters and three brothers.  Then I started to name them.  Now, Marie is her second oldest sister and was married and out of the house long before my mother was born.  They never had much of a relationship and my mother told me on several occasions over the years that she really was always afraid of Marie. Even as a young woman, Marie was pretty large and I can imagine that she was scary to little kids, especially since she was an alcoholic and who knows what she was like when she came home drunk.

I started at the low end of the siblings and mentioned Marge and Barb, the two sisters she was closest to throughout her life, and Paul and Betsy...saying the names slowly to let her think about each one.  Then I mentioned Jim and Scotty and then Marie and Mel.  When I got to Marie's name, she waved and said "oh you can leave Marie out of the list."  She can't remember her own name but remembered that she never liked Marie!  I so much wanted to share that with Peach and Kathy who, along with my mother, would be the only ones who would have realized how funny that really was.

She had a bowl of soup and some ice cream and I got a really good recording of our conversation, which I stopped when we left the dining room.  When she got up, I told her to get her walker, which she did without complaint and pushed it all the way back to her apartment (I had to show her where her apartment was).  I think this "wiping the brain clean" erased her memory of how much she hated walkers and when the aids got her into hers, she just accepted it as the way things are now.  It will be interesting to see how things are tomorrow.

We sat and talked for awhile.  I mentioned something about my father and she said "I was married to him, wasn't I?"  When I told her that yes, she was she said "I really miss him."  Then I told her that no, she probably didn't miss him but missed her second husband, Fred.  She was a bit vague on Fred and couldn't picture him in her mind (which made me sad, because she loved him so much).

She asked me several times if she had done anything in her life and I enumerated things that she had done (she had no memory of my sister, except, when hearing that she died many years ago, she said "that must make you sad.") 

I told her about her career with the Bank of America, which she can't remember, and the years that she volunteered at Hospice of Marin and how much she was loved by people.  That seemed to make her happy.  Though she can't remember any of those things, she was glad to hear that she had accomplished things in her life and that people liked her.

We sat and talked for half an hour more and I had this notion, from watching her body language and listening to what she was saying, that some of her old self was coming back again, so I felt comfortable leaving her, but I promised that I would be back the next day.

As I was leaving, I realized that she had not ONCE mentioned any pain!!!  What's more, she wasn't moving as if she was in pain either.  Maybe the new medication is finally working.

Ned called and said he was going to visit her tomorrow and was bringing a little watermelon he thought we could share, so I will meet him there and we will have watermelon together...and I'll see what she's like then.  Every day is a new adventure, and who knows what her brain is going to be doing tomorrow.

But I sure had a good day with her today, and best of all, if she screams at me and throws me out again, I can come home and play our conversation on tape and remember when we had a good visit together.

Monday, October 10, 2016


Today was a new experience, another step down into that pit that will ultimately, if she lives long enough, get my mother moved to the memory unit.

When I arrived for lunch, I was surprised to see her newspaper had been picked up, the kitchen light was on, the curtains were opened.  All signs that she was up.

But she wasn't.  She was in bed, still in her night clothes.  She was awake, but in bed.

I asked her what was wrong.  She said "everything." (when was the last time she greeted me with a smile...?)

I asked her if she hurt, and no, she didn't hurt.  I was specific.  Did her back hurt? No.  Did her leg hurt?  Yes.  Did her stomach hurt?  No.

Then she asked "what are we going to do about all this stuff?"

I asked her what stuff was she talking about.  She spread her hands out as if the answer was obvious.  "All THIS," she said.

Turns out it was an anxiety day.  She doesn't know where she is, where she is supposed to be going, what she was supposed to be doing.  We have this conversation almost every day.

I told her yet again that she had lived here for three years, that this was her home, that she had nothing specific that she had to do, but she should get dressed so we could go to lunch.

She looked at me as if I were speaking Chinese.  She asked again "but what are we going to DO about all this?"

Then she asked "isn't there someone else in the family I could talk to."  I explained that all of the family were dead and she was stuck with me.

She kept looking around warily as if she expected something terrible to happen at any minute.
I tried again going through the "this is your home, you have nothing specific to do, just put on your pants and we can go to lunch."  She tried to put on her shoes.  I suggested she should put on pants before her shoes.  She said again she didn't know what to do or where to go.  I expressed my frustration saying I knew how scary this was for her, but that there was nothing I could do for her.  That I'd tried to answer her questions, but she didn't understand.

Then she whirled on me and yelled JUST GET OUT OF HERE!!!!! I said I would leave and told her I would be back tomorrow and she yelled DON'T BOTHER COMING BACK!!!!

Now, I know that this sort of thing is common with dementia, the anger and turning on loved ones, but it hadn't happened to me yet and I was in tears when I left (slamming the door behind me).  I stopped at the office and talked with Brianna, who is in charge of her physical health at Atria. I told her I wasn't upset with Atria, but I just had to vent.

I told her what had happened, and broke down crying.  She was wonderfully understanding.  I'm sure she gets this all the time. We talked for a long time and she gave me a report on how my mother was doing in general, on the dinners she had seen her eating with her friend Loretta, how she sometimes sees her wandering around the hall by herself, so I know that she's doing OK--and that they are keeping a careful eye on her.  So I'm not really worried for her.  We've been through these "anxiety days" before, but it's so frustrating to be unable to bring her any peace ... or, for that matter, pain relief.  

I asked about whether they had been using the Lidocaine cream I got on Friday and had rushed through getting a prescription for, even though it is not a prescription med. My mother doesn't remember anybody putting cream on her back (but I never take her word for anything). Brianna told me one reason they haven't used it is that the medication I was given by the pharmacy is Lidocaine RECTAL cream!  This is for rubbing on the skin of her back.  I came home and wrote to her doctor, who has read the e-mail, but has not answered yet.

Though I felt better after talking with Brianna, I still had a little cry when I got into the car.  Then I called Walt to report what had happened, and I sent a text message to Jeri and Ned.  Jeri said she called her grandmother after my text, but there was no answer.

I went off to the supermarket and loaded up on comfort food, came home and just sat there feeling depressed.

I remember when my father had a nervous breakdown (or what was called a nervous breakdown in those days) after his job working on the train ended and he had to go to work in the main post office instead, getting mail ready to be shipped by airplane instead of train. He started seeing a psychiatrist, who got him on anti-depressants, Night after night I remember him sitting in total darkness in our living room, the only light the red from the tip of his cigarette.

I thought about him today as I sat in my chair.  I wasn't at the depths, but was definitely affected by mother's anger at me for the first time in my life that I remember!  It hurt first when she asked for someone else in the family to talk to, because obviously I was no help to her at all, and then throwing me out of the apartment and telling me not to come back.

Oh, I know that when I go tomorrow I'm sure she will be fine and I know that probably by the time I got to Brianna's office, she had already forgotten about it, but I'm still digesting it and it won't really clear until I see her again NOT angry with me.

Of course then I came home and turned on the news, and nothing about the endless dissections of last night's debate is designed to cheer me up.

Maybe I'll take up smoking and start sitting in the living room with the lights turned off

Friday, October 7, 2016

Pain? What Pain?

Ahhh....the magic of Kaiser physicians yet again.

I have not seen my mother most of this week.  Well, that's not true.  I've seen her twice, once on Monday, when I got there at 1 and found her sound asleep and just dropped off her laundry and left, and once on Wednesday when I went for lunch, got there at 11, stayed for an hour and then left because she was still sleeping.  I figured if she was deeply asleep, given how many nights of insomnia she has had over the past months, I should let her sleep.

[laundry note -- today it was 3 days since I left her laundry for her and I found the bag stuck in a corner, still full of clean laundry.  Since she was out of underwear, I don't know what she has been wearing!]

Her stepson Ed went to see her while I was working at Logos and texted that he wanted to talk with me, so I called last night.  He said he arrived at Atria at 11 and she was asleep.  He also said that it looked like it was last night's dinner that was cold on the counter in the kitchen (which meant that (a) she did not eat last night, and (b) nobody checked on her in the morning.)  He reported that she says she can't eat anything because it makes her vomit, though he could not see any sign of that.

I sent off a text to Melissa at Atria and received this response:
we are taking Mildred to meals as she allows us. This week though she has refused to go to eat and is requesting trays. When the trays arrive she will look at it and push it away. Mildred is wanting to sleep more and her back is in pain. The walker she refuses to use most of the time. I have not heard anything regarding vomit or nausea only the back pain. I have noticed it is more difficult to walk as she says she is in extreme pain. Are you opposed to discussing a smaller environment like our LG neighborhood? (memory care)?
(I told Melissa that i was open to discussing moving her to the memory care unit, but I didn't think she is at that point yet.  She agreed with me.)

I called Kaiser and found out her doctor had no available appointments on Friday, but they managed to get her an appointment with another doctor.  It was a 10:40 appointment and that meant I would have to wake her up, which I did.  She did not want to go to the doctor, but under duress agreed.  She even agreed to my pushing her in a wheelchair out to the car so she didn't have to walk the hall.

She asked me every five minutes what we were going to tell the doctor.  When the doctor came in and asked my other what the problem is, she turned to me and said "I don't know.  What is it?"  When asked if she had back pain she neither had back pain nor did she remember ever having it.  She ultimately said that oh sure, sometimes her back hurts, but it's not bad.  Arrrggggghhhhhh.

Fortunately the doctor asked her to lie down on the exam table and when lying down she grimaced and said it hurt.  She pointed out to the doctor (at my insistence) where it was hurting.  Then when she went to sit up again, the pain doubled her over.  FINALLY!!!!  I don't want my mother to hurt, of course, but finally a doctor has gotten a taste of the real pain she is suffering.

She suggested physical therapy which I would have suggested weeks ago, but her regular doctor never brought it up.  I also asked about a pain patch (which Melissa at Atria had suggested).  She agreed that also might be a good idea (also nothing her regular doctor recommended). So we have a first appointment for physical therapy later this month and we went to the pharmacy to get her "patch" only it turned out to be a cream, not a patch...and not a cream that needed a prescription.  While we were leaving the exam room, my mother told me that the pain was running up and down her leg.  I repeat ... ARRRGGGHHHHH!

At least we have something new to try.

I took her to iHOP for lunch and while her over-55 menu item (scrambled eggs, bacon and hash browns) looked to her too big to eat (she complained over and over again), she ate it all and said it tasted good. . Who knows when the last real meal she ate was.

I took her home the long way so we could drive by a lot of places with trees, since they give her such pleasure. She loved it and when we returned to Atria (which she did not recognize), she told me it had been a lovely drive.

When we headed back to her apartment, she was in great pain and she was kind of holding onto the railing on the left side of the hall and I pointed out that if she kind of leaned on it, it could take the pressure off of her back and she would have less pain.  She agreed and immediately let go of the railing and walked in the middle of the aisle.  She really, REALLY doesn't want to think she needs assistance!!!

I keep trying to think what it must be like to be inside her head.  When we got back today, she sat in her chair and asked where we were going next.  I told her I was going home and that she was going to stay there.  "Is this my home?" she asked  I told her it was.  She looked around and said she didn't recognize anything, but when I pointed out the flowers she always tells me she loves many times while I'm visiting, she thought she remembered them.  I can't imagine how terrifying it must be to never be sure where you are, to never recognize anything around you.  My heart aches for her.

This evening, we received e-mail from Marta asking about Thanksgiving plans.  I hadn't thought of that holiday looming (plus Christmas) and I realized that I am so depressed about what is going on with my mother that I can't even begin to think about the holidays.  My mother won't realize it is a holiday, but if we do nothing with/for her, she will get her feelings hurt, but I am remembering our attempt to bring her Thanksgiving last year and the whole idea of having us there for the holiday made her sick to her stomach, so we ended up having an impromptu Thanksgiving dinner here instead.  I just want someone else to decide what, if anything, we are going to do.  I can't even begin to think about planning a holiday right now.

Saturday, October 1, 2016

Another Walker Up;date

I got to Atria and found her sitting in the walker out in front of her apartment.  I think she might have locked herself out and since the walker was there in the hall, she sat in it.  I didn't comment on it and just opened the door and we went in.  When we left, she opened the door, saw the  walker and asked if it was mine.  I didn't make a big deal out of it, just said that she had been sitting in it earlier and that it belonged to Atria.  She said nothing.