Journey Through Dementia

Journey Through Dementia

Thursday, December 22, 2016

A Conversation

I took this video, really, to test out the quality on my new phone.  This was a fairly good day.

Sunday, December 4, 2016

No Memory

She couldn't remember 2 seconds today.  bad, bad, bad day.  I brought her a box of Sees candy and a copy of my Christmas letter.  I had to tell her three or four trimes that there was a box there and she never zeroed in on it. When she did, she asked me over and over again if she could keep it.

As for the letter, she looked at the picture of Tom and his family and said "I don't know any of these people" then looked at the other ictures and said she didn't know any of them either.  She saw Walt's name and asked me who Walt was.  I told her he was my husband and she said "I guess I never met him."  I said something about Jeri and she wanted to know who Jeri was.  She eventually recognized Ned when I reminded her he had been to v isit her the day before.

She couldn't get it into her head that I had written the letter and every time she came to the line "My mother is 97 years old," she said "she writes about her mother being 97.  Is that me?"  She read the letter over and over again and remembered and forgot different things.  After saying she had never met Walt, she pointed to the picture of the two of us and said "that's a good picture of you and Walt." I don't think she ever figured out who Tom was, but she did eventually recognize Jeri.

I ache for her.  I ache for me.  I wish it were January.

Friday, November 18, 2016

Night Terrors

I got a call at 9 p.m (as I was almost finished cooking dinner) from Atria.  My mother was upset and agitated.  Same ol', same ol' ... didn't know who she was, where she was or what she was supposed to do.  I tried to calm her down on the phone and tell her what she had to do was go to bed and I'd be there in the morning. But that was WAY too complicated  I asked her to let me speak to the girl in the room with her, and she hung up.  I called back and asked her to hand the receiver to the girl.  She said "I don't understand a word you're saying."  I said "you know the thing you are holding in your hand and talking into" (she said she did) "give that to the girl in the room."  She did.  The girl seemed to think there was no way she was going to be able to calm her down, so I dropped everything, gave Walt instructions for how to finish cooking his dinner, and went over there.

I could see she was in one of her bad states.  She didn't know who I was and just sat there clutching her purse and saying she was scared.

I told the girl I could handle it and I took her to the couch and at down with her.  I told her I knew she was scared and jst kept talking to her calmly until I finally got her more calm, but still scared and still the same questions

I've finally found an explanation that seems to make sense to her  At least she accepts it all twenty-'leben times I use it with her.  (in case you need to explain dementia to her at some point).  I tell her that there is a disease in her brain that is gradually eating away pieces of her brain and that there is no pill she can take that will make it better.  The first time I used that a few days ago, she said "Well THAT I can understand!"

I got her talking about the family and how her mother and Barb both suffered from this and she even sort of remembered her mother having it, though she can't remember being married to Fred.  When I brought out his picture she said she sort of remembered him and that he looked like a nice man.

Anyway, it took an hour but I finally got her off the couch, into her PJs and in bed.  I told her I'd be there first thing in the morning.  She is terrified she will wake up in the middle of the night and not know what to do.  She was upset that I wasn't going to spend the night.  I was going to try to get her to wear her call button, but it has, of course, disappeared...and it's really not that important because she wouldn't remember to use it anyway.  At least if she gets terrified and leaves the apartment she has PANTS on this time.

Tuesday, October 25, 2016

Pants

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

Nonsense


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

Mail

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

GET OUT OF HERE!!!!

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.

Friday, September 30, 2016

Walker Update

I sent Melissa at Atria an e-mail to check on how Operation Walker is going.  I was amused to receive this reply:  it has been hit or miss with the walker. We are starting something new though, taking the walker with us to escort her at that time. If we leave it around her or in the room she gets upset and will NOT use it. I will keep you posted over the next few days. Ahhh...that's the Mother I know and love.  I t old her to keep at it, that I won't mention it or it would turn her off further (since I've been trying for 3 years), and when/if she ever routinely uses the walker, I would immediately go out and buy her one.

Wednesday, September 28, 2016

Operation Walker


I received the most amazing email from the patient coordinator at Atria.
Hi Bev, we all have noticed Mildred would benefit from having a walker. Mildred loved it and had no pain while she was using it as a trial for the escort to dinner yesterday.
Mildred LOVED it????  The coordinator, of course, had no idea that this is something I've been trying to get her to agree to for three years.  With the severity of her back problems, I knew that a walker would help her, but could I get her to even think of one?  No way.

From the first day, she looked down on "all those people using walkers."  (Now, of course, she has forgotten the word "walker" and dismisses them as "things.")

I have tried to trick her into realizing that a walker would help by taking her shopping and, when she complained about her back pain, suggesting she push the shopping cart and kind of transfer her weight to the cart, relieving the pressure on her back.  She agreed that yes, that did help, but when I pointed out that this is the benefit she would get from a walker, she refused to push the cart any more.
I have tried suggesting she use my cane when she was having difficulty walking.  In truth, most of the time I am fie without it, though my balance is getting weird, so it's a safety measure, and I don't know that I could climb stairs any more without a cane or banister. 

She did try the cane and admitted that it helped, but almost immediately gave it back to me like it contained poison and told me that I needed it and I should use it and how lucky I was to have fond something that helped.

So to hear now that "Mildred loved it" made my jaw to slack.

Of course, I suspect there is a lot of people pleasing involved in that.  She looks on the people at Atria as her bosses and, always wanting to do the right thing, if they suggest she use a walker, I can see that she would readily agree, without admitting her true feelings about it.

Another perk of having her on assisted living.

I told Melissa that we would give her a few more days to get used to the idea and if by next week she is still accepting the idea of using a walker to walk, I would go out and shop and get her her very own walker.

I have always thought that if she had a walker with a seat on it, she could actually get out and DO things.  I don't take her anywhere now because she has to stop so often and sit down.  But if she brought her seat with her, things might be different.

Walt was in the Bay Area with the car yesterday, so I didn't go to Atria, but I will go over today and I am going to be very curious to see how our visit goes and whether she will mention the walker.  I won't bring it up, but will let the Atria people deal with it with her.

I decided long ago that she is so damned independent and so proud of her not needing any assistance whatsoever that if she ever had to use a walker or wheelchair, she would just curl up and die.

But maybe I'm wrong.  Maybe this could be the start of a new chapter for her.  I am holding my breath and being cautiously optimistic.

Saturday, September 24, 2016

Lunch

I was scheduled to do an intervies in the morning and then would have lunch with my mother As it turned out, the interview was so interesting that I was there for over an hour and I figured it was too late for lunch, so I would just wait in the apartment until she got back.

Well...no.  She was on the couch when I got there and said, as she usually does, that she feels terrible. She feels terrible all over, but can't say specifically what feels terrible (except her leg, which still causes her so much pain she can barely walk).  I'm beginning to think that the "feeling terrible" is more an emotional thing than a physical thing because the more "awake" she gets (from chatting), the more normal she seems.  This is one of the unintended perks of having her on assisted living.  She gets contact at least four times a day from Atria staff and each contact is a social interaction, which she enjoys.

We had a nearly an hour before her appointment, so I got her some coffee and a couple of oatmeal cookies, just to get something into her system before her hair appointment t 1 p.m. The hair salon was moved upstairs and cut in half, size-wise and it is no longer a comfortable place to chat with your neighbors while waiting for your turn.  With all the cut backs and rent raises, f my mother wasn't so settled and happy, I'd look for someplace else, but she likes Atria and it's so close to my house that it's convenient for me too.

Anyway, over an hour of chatting and coffee she eventually seemed not to feel "terrible" any more, but it killed her to stand up and walk, but we did it very slowly, stopping twice for her to rest on the way to the elevator.

A beauty parlor is a good place to get back to "normal" again


And when she was all finished, the change from before was amazing.  


We only had to stop once on the way back to the apartment, but she had to hold on to walls and furniture, and me, to stand up and she collapsed into her chair as soon as we got back to the apartment.  

Once I saw her in her chair, reading the newspaper, I left to go shopping.  We had made it through the week.  She'd been x-rayed, poked and prodded, medicated, and zapped.  She'd had a trip to the ER, a mental health exam and a hair do and we were finished.  I'd met with the folks from Atria a couple of times, her dentist once, and the insurance guy.  I got her outstanding bill paid and now just need to send paper work to her insurance company to get the process started for long term care reimbursement.

Thursday, September 22, 2016

Five for Five

Today was the fifth out of five  days when I have had something to do with my mother, whether taking her to appointments, sitting with her because she was too upset to leave, going to meetings about her, or talking with many folks on the phone about her.

There is a perk to all of this:  I haven't seen or heard from Trump in at least three days.

I had a terrible time getting to sleep last night and it was well after 1 a.m. before I fell asleep and my alarm woke me up at 5:30 because I had to take Walt to the airport at 6;30 for his flight to Santa Barbara.  I went from the airport to Atria, where I had to wake my mother up at 8 so we could get on the road by 8:30 for her 10 a.m. EEG.  I was worried about waking her up so early but someone from Atria was there to check on her and she helped me up.

My mother when awakened two or three hours early is actually quite docile, because she's so confused.  This morning he leg hurt so badly that she said she wouldn't be able to walk.  We did get her up, however, and I called for the Atria person to brig her meds so she could have a pain pill before we left.

But, since we were going out, she wouldn't give her Norco because it might make her dizzy and instead just brought Tylenol, which I know from experience does zilch for her pain.  I was miffed about it, but realized I had to let it go, so I did.  I just listened to her pain for the whole morning and felt helpless.

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.  The reason for all this is to find out if she is having seizures, which are causing her to pass out so often.

We got to the EEG lab and they took her back to attach the 25 electrical sensors to her head.


The tech said that the substance used to attach the sensors was like shortening.  This is what you look like after they are all removed


My plan had been to stay in the room and read for the 30-40 minutes of the exam, but the idea is for her to go to sleep so they turned off the lights.  I also started coughing and coughing and the tech had told me that if I coughed I'd have to leave the room because they wanted her to sleep.  I left the room and passed by the room where they were monitoring her.


I sat and read for half an hour and she eventually came out, still not sure where she was or what she was doing.  

I took her to lunch at Denny's and she ate a lot, though could not get comfortable in the booth, or in the car on the drive home.  When we got to Atria, I walked her to her apartment so I could carry her laundry for her, but I didn't stay.  I figured she needed a nap...and I definitely did too.  I came home and slept for two hours.

Tomorrow I am doing a theater interview at 11, though I've been so preoccupied with my mother, I can't even remember what the show is about.  The interviewee is someone I've known since he was a little kid and I'm doing the interview at his parents' house so they can babysit while we talk.  I must read up on this play before I go!

But then in the afternoon I'm taking my mother to the hairdresser's at Atria to get all of that goop out of her hair.

Saturday I have absolutely nothing to do and I don't intend to go to Atria.

Wednesday, September 21, 2016

Conferences


Another day of "mom-stuff."

It started at 10 when we went to Atria to meet Sean, the nurse who does assessments for her long term care insurance company.  Ned came too and was invaluable, keeping her "entertained" with jokes and explaining things to her.  Every time Sean asked me something and I answered him, my mother would mutter to Ned that we were talking about her and not letting her know what was going on.  I would try to explain what I had just told Sean, she would tell Ned she didn't understand a word I said and Ned would explain it to her over and over again. He was very patient and the day would have gone so much worse if he had not been there.

Finally someone has given her a comprehensive mental health evaluation, the results of which didn't surprise me, but I wish it had been done when I first asked for it >10 years ago (and several times since then) so we had a baseline. But this is better than nothing.  Most questions she couldn't answer (including how old she is), and she could not completely copy a simple figure he asked her to copy (two overlapping 5-sided figures.  She drew one.)  She aced the physical part, for balance and that sort of thing, but anything that involved mental calculation was pretty much a disaster.

I had to laugh when he asked her how often she went out of the building and she told him she occasionally went out for walks, sometimes to go shopping.  Since she is afraid of going out of the building, doesn't know where the nearest store is and has no money in her purse..I don't think so!
I had dropped off her meds with the front desk and realized that her Norco, the pain med, says one tablet 2 times a day, but the doctor said to start with half and see how that goes.  Since it seems to be working with just a half, I mentioned that she was only getting half.  They told me that without an order from the doctor, they would follow what was on the bottle.

So I came home and emailed the doctor.  Her nurse called back and said that Atria had also called them and they were faxing over a revised prescription.

Then it was time to go to the conference with Cindy, my dentist, about the exam she did on my mother a couple of weeks ago.  

There are lots of problems, but only one that is dangerous enough that it should be taken care of now (an extraction). Cindy is so good and so understanding.  Given my mother's age, she says that the remaining problems can be on a "watch" basis and if she starts having pain, we can deal with them at that time.  Cindy, like me, wishes she knew how much longer my mother has so she knows which dental problems are important to deal with and which are OK to just let go for now.

So I had the whole rest of the afternoon with no Mom to take care of.  But she has an appointment at 10 am. tomorrow for her EEG, an appointment which is in Sacramento and I should allow an hour to get there, because of rush hour traffic. When they set up the appointment they told me to tell her to stay up late and get up at 3 a.m.  Yeah.  Right.  I kept saying "you understand she has dementia, right?"  I guess the idea is they want her sleepy when she comes in, but since I'm going to have to wake her at about 8:30, that's probably a given.

Tuesday, September 20, 2016

Assisted Living


a meeting with Melissa, the patient services coordinator, to discuss the next day's visit by the long term care nurse, to assess my mother's approval for a claim against the policy for which she has been paying >$3000 a year for decades.

First we went to give her the evening pain pill.  She was still in pain but her mood was significantly better.  I remembered when my friend Phil Dethlefsen, who was on all sorts of pain meds, told me that they didn't take the pain away, but they just made him care less.  When the woman who has been checking on her for meals came, she was delightful toward her, and happily went off to the dining room without even worrying about leaving Walt and me behind.

After we left the apartment, we went to Melissa's office and discussed her "action plan."  As of today they will take over giving her the meds, which takes a huge load off my mind.  We also decided to put her on "escort" services to take her to meals.  She seems to enjoy the camaraderie of the caregivers and has no problem going with them to meals.  This may eventually increase her involvement with Atria, but I won't hold my breath.

I had to sign forms for my mother as her power of attorney and I have to admit it felt like putting her in the home.  Nothing really changes except Atria will have more involvement with her (and it will cost ~$800 more a month), but still it felt disloyal doing this without her knowledge, though she always seems OK with whatever I suggest.  Still, it was harder on me than I expected and I cried to Walt when we got home that it was "tearing me apart"

In fact, I couldn't eat, and fell asleep watching TV, and slept all night after James Corden woke me up and I staggered to the couch to finish the night.


All things considered, though, in the cold rainy light of day I am relieved to know that they will be keeping an eye on her, that she will get her meds regularly, and that she may now eat more than cookies at lunch and dinner. I won't feel quite so guilty on days I don't go to Atria.
 

Sunday, September 18, 2016

Best Laid plans


We were gong to a wedding reception in San Francisco.  I had been looking forward to it for weeks.  We stopped by Atria on the way out of town to drop off a new telephone.  Her telephone has stopped working.  From the minute we walked in the door, I knew, with a sinking heart, that I would not be going to the party.  She was in great pain.



She was practically in tears.  She also wasn't dressed and I got her to put on her slacks, since Walt was walking around.  She was so incredibly pathetic, I would have lived with great guilt if I left her there and went off to party, so I sent Walt to the party (so he could deliver my card) and I told him that he could pick me up on the way home.

(I figured I could at least watch the Emmys live, but then discovered her TV is not working.  I have put in a work order to fix it, but that won't be until next week.)

I gave her a couple of Aleve, but I know that doesn't do anything for her pain, and I fixed a cold compress, but she didn't want to wear it because it was ... well... cold.  Her doctor had sent me a message on Friday.  She was  going to try Norco for her but her note said "sorry read message late was very busy to see patient, so can not send Norco prescription "  I don't know if this means she has decided not to give her a pain medication or if she means that she was too busy to help with her pain on Friday and she would have to wait until Monday.  (English is not her first language and she doesn't communicate well at ALL in writing.)  I sat down and wrote to my gynecologist to ask for suggestions of someone who is a good gerontologist that I could switch my mother to.  She's going to refer me to someone who can help me make that decision.

She took a nap for an hour or so and I read but then she was awake again and pacing and trying to find a way to help her pain.  

The afternoon was horrible.  She fainted once, and was extremely restless, moving from chair to couch, sitting on one butt cheek, then another, crying out in pain and wailing "What can I doIt hurts so much!"  I asked her again about the cold compress and she got that "I'm not interested" look and told me to "leave it in the refrigerator and if she thought she would need it, she'd get it."  She also has a new trick...when you suggest she do something to help herself, she tells you how pretty you look, or how nice your shoes are...anything to shift the topic of conversation.

Her Atria helper came to take her to dinner but she could barely walk across the room, so we decided on a carry-in dinner.  I never got anything, but I did find out that the fainting episode that sent her to the ER happened in the dining room.  She has her EEG on Thursday.

When the pain was at its worst I asked her again to try the cold compress.  She reluctantly agreed and I handed it to her and told her to put it where it hurts.  "Where?" she asked.  "On your BODY," I replied.  This is what she did.


I told her it was supposed to go on her hip, where the pain was.  She put it there but got up every minute or so to walk around and told me she couldn't use it because it was cold and uncomfortable.

She had moved to the couch and I was telling her she was going to the doctor on Thursday for her EEG.  "Why?" she asked.  I said "To see if they can figure out why you are passing out," and I also said she would have lab tests and an x-ray to see if they could find anything that would help them treat her pain.

"Pain?" she asked.  "What pain?"  I said "aren't you in pain right now?" and she looked at me like I was stupid an said no, testing her arms, reaching over to feel her legs.  No pain.  Five minutes later she was writhing in pain again  This is why it is almost impossible to get a doctor to listen to me!  The girl who was going to take her to dinner asked how she was and she straightened up, smiled broadly and aid "Oh, I'm just fine!"

By this time it was 7:30 and I expected Walt to arrive sometime after 8.  I had answered every usual question at least 20 times, with one new one added.  I had given her a pair of slacks she didn't recognize and had to tell her over an over again that she bought them at Hodge Podge several years ago and I had found them in her closet.  She said she'd never seen them before (I fully expect them to be thrown out when she takes them off)

She noticed the new phone several times and is NOT happy with it.  It will have to be moved, she says, because the telephone doesn't go there, there has never been a phone there (though we removed a phone from that very spot when we put the new one in)

Anyway, she was starting to get sleepy and if I stayed another hour, I was going to go stark raving mad, so I kissed her, told her to go to bed and left.

Half an hour after I got to the lobby I got a call from Walt saying he was stuck in traffic and it would be another hour before he got to Davis.


Thank goodness for my Kindle.

Saturday, September 17, 2016

Update


As a P.S. to yesterday, I spent the morning talking to the Long Term Insurance company, her doctor to try to get some relief for her pain, shopping for a cold wrap to put on her back, someone at Atria about the upcoming assessment for assisted living, and finally going to Atria.

I found her in the lobby listening to music, a smile on her face, no memory of 3 days of pain or of her trip to the emergency room, and confused about why I had been concerned.


Grrrrrrrrrr!!!!!

Friday, September 16, 2016

Today at Atria


Well, today may have been one of the most depressing days I've spent in a very long time.  I contacted Susan last night from the ER and told her I couldn't work today.  She understood.  I went to Atria to spend a few hours just to observe my mother and see how she was after the emergency room trip last night (of which she has no memory).

I knew it was not going to be a fun day when I walked in and asked how she was. She had her head down and said "not good."  I asked what hurt and she said her headache, her stomach was upset and her right leg was hurting a lot. She asked if there wasn't something I could do.

Sadly, and bad me, this led to about a half an hour discussion about how I had taken her to the doctor (which she does not remember) and she told the doctor she had no pain.  I told her that the doctor can't help her if she doesn't let her know what hurts.  She got defensive and decided that she just would never say anything about her pain again, since she doesn't know what to do and how to do it.  She could not get comfortable in any position.

I actually took a video of her describing her pain so that if she tells a doctor she is not in pain, I can show what she was talking about.

An Atria worker came in to check on her and my mother perked up and didn't mention her pain, then sank back down into her pain again after the worker left.

I had gotten there at 11 so at 12, I asked if she felt like going to lunch, which she agreed to do.  As luck would have it, they were celebrating September birthdays and she agreed to sit at the birthday table, though didn't talk to anyone  I did not have my camera with me.  One of the guys at the table will celebrate his 100th birthday next week.  I'm wondering if maybe she was miffed because someone is older than she is and she seems to want to think nobody can possibly be as old as she is.
But lunch was uncharacteristically good and they brought out a HUGE birthday cake and all the staff sang to the birthday people.  My mother never cracked a smile.

I was going to pass on the cake in preference for peach pie, the alternate choice, but, as an old cake decorator, I was curious about both the cake and the mountain of frosting on it.  I decided to have a piece, fully expecting to find the frosting cloyingly sweet, but instead it was stabilized whipped cream and absolutely delicious.  So I ate the whole thing, which I regretted about 4-5 hours later when I had the sensation of being uncomfortably full!

We went back to the apartment (she is never sure how to get there).  She tried to get comfortable for awhile and I finally suggested she take a nap, which she did...so I did too.


(isn't it amazing that I can take selfies in my sleep?)

She slept for about an hour and woke when Jeri called.  Jeri is usually a bright spot in her day, but she seemed almost irritated that Jeri kept talking to her.

After we finished the conversation, she was very restless, saying over and over again that she doesn't know where she is supposed to go or what she's supposed to do.  This is not a new thing.  She has said that every single day since she moved to Atria.  She knows she has to do something but she is so afraid of doing it wrong...and can't figure out what it is in the first place.

I reminded her that I had brought her clean laundry and that it was on her bed waiting to be folded, so she got up and did that (to my surprise; usually when I suggest some simple task she can do, she refuses to do it).  But then she came back and it started all over again -- where was she supposed to go and what was she supposed to do?

I tried telling her that the doctor told her she was supposed to rest today, but she wasn't buying that.  She would just sit there, head in her hands, the picture of misery because she can't figure out what she is supposed to be doing -- and the leg pain was just making it worse.

She would get up, walk into the bedroom, turn around and walk back out again and into the kitchen, then back to the couch to ask where she should go and what should she do.  Then she'd repeat the trip again.

I cannot tell you how much it pains me to know that this seems to be her life now.  Agony over not knowing what to do and unwilling to do anything suggested she do, even something as simple as moving the newspapers, which are bothering her because they are "clutter" and putting them in a stack so the housekeeper can throw them out. I cannot tell how many times I have suggested that "something to do" to her, but she never does it.

I finally came home, hating to leave her but there was nothing I could do to help her.  I did come home, though, and wrote to her doctor.  I can't believe there is NOTHING but Tylenol to relieve her pain.  This is what I wrote:
I'm sorry to keep bothering you. I spent 5 hours with my mother today and she is in agony over her leg pain. She says it starts in her right hip and goes down the front of her leg to about mid-calf. This is no attention-seeking, she even cries out in her sleep. Today only one leg was involved, the other seemed OK. But she could not sit or lie comfortably anywhere. She walks very slowly, and with a limp.

She had a bout of sciatica many years ago. I'm wondering if this might be the problem. I'm also wondering if referral to an orthopedist might be in order. I am so frustrated because Tylenol does not help and it is so frustrating to see her in such pain and be able to do NOTHING to help her.
I read up on sciatica and it is described on one page I found (which, of course, I cannot find again) as pain originating in the hip and going down usually just one leg to about mid-calf.  That is EXACTLY the pain she is describing.  I hope Dr. A will give us a referral to an orthopedist because it is clear that she herself has nothing to offer my mother, but that doesn't relieve her pain at all.


I just hate to think that this is her life from now until it is over. 

Thursday, September 15, 2016

The E.R.


  Atria called to tell me they were sending my mother to the ER.  They said she had fainted and was "disoriented" and that her blood pressure was "sky high." They sent her to Sutter Davis Hospital (where I volunteer) and I rushed over there.  She was scared and confused but I kept explaining things to her and got her laughing.  

They ran every test in the book including another CT scan, chest x-ray, EKG and tests on every possible body fluid.  All came back normal.  The doctor had no clue what the problem is but suggested maybe getting an EEG to rule out seizure disorder was recommended.

After reviewing everything I know about what happened, I think that Atria people were just seeing one of her "spells" for the first time and to be safe sent her off to the ER.  I am going to talk with them tomorrow.  I am going to have lunch with my mother and then spend a few hours with her just to kind of take stock of how she is and if she faints again.

It's not time to plan her funeral just yet.


But it looks like I'll be taking her back to the doctor again soon.

Wednesday, September 14, 2016

That's It -- I'm done


Unless she is unconscious or bleeding...profusely... (or both) I am finished taking my mother to the doctor.


Yesterday she was in terrible pain. She always has back pain, but it was shooting down her legs and she could barely walk.  While I was on the phone talking to Kaiser, she staggered to her bed and when I came home, she looked like death warmed over and said she wasn't going to get out of bed.
The nurse and I agreed I'd bring her in to Kaiser at 11:30 today and I fully expected her to be just fine, and me feeling like an overreactive idiot. Again.

But when I arrived she was in the kitchen and when I asked how she felt she said "not good" and it was one of her more vague days where she didn't know where she was or what she was doing. Good. At least she was symptomatic...and I hate to say I was glad that she was feeling bad, but at least the doctor would finally believe me.

I could tell how bad it was because she agreed to let me take her to the car in a wheelchair so she didn't have to walk down that long hall when she was in such pain. She is usually so adamant that she needs NO assistance, whether cane or walker or wheelchair, the fact that she got into the wheelchair without argument spoke volumes.

We drove to Kaiser and on the way there she kind of "came to" and started commenting on the pretty trees again, and when we arrived at Kaiser, she refused a wheelchair and walked to the waiting room.
We waited for awhile, during which time she asked me many times where we were and why we were there.

When we got into the exam room, she turned into Miss Personality again.  Pain?  What pain?  She had no pain.  The doctor manipulated her feet, her legs, her hips.  She poked and prodded and to everything, my mother responded that nothing hurts.

So  OK.  The pain is gone.  That's good, but again I felt like an overprotective mother running my kid to the doctor for every little pain.  That's kind of how the doctor seemed to feel.  We came home with the suggestion that she take Tylenol if she had pain again.

I decided to take her to lunch and we went to IHOP, the closest restaurant to Kaiser.  As she got into car, she winced and grabbed her leg and said it was hurting.  When she got out of the car she hobbled into the retaurant and when she got into the booth, winced and kept rubbing at her thigh saying it was "giving her fits."  When I expressed frustration that not ten minutes before, she had told her doctor that nothing hurts, she said "well, at that minute it didn't hurt."


Throughout the lunch she was constantly wincing and moaning and trying to find a comfortable spot in the booth because her body hurt so much shifting from cheek to cheek and groaning with every move she made.

ARRRGGGGHHHHH!

She was uncomfortable in the car and didn't understand why I was frustrated.

I let her out and told her I'd be back in 3 hours with the guy who was going to see about fixing her chiming clock.  I had forgotten to take her key with us, so I gave her my key so I could leave her at the building, since there was no parking to be had in the whole block near Atria.

When I returned with the clock guy, she was not in her apartment and I had to get someone to let me in.  Darrell fixed the clock and left and I hung around until my mother got back.  She didn't remember where she had been. But she was moving like someone in great pain.  Again.

She hobbled over to her chair, sat down, winced painfully and said her legs were giving her a hard time today.

I couldn't even discuss that because she wouldn't understand.  But I went home and send the following email to her doctor:
I am sending my mother to live with you. We went to lunch after her appointment and she winced and gasped and groaned and rubbed her thigh and told me it was "giving her fits." She is only pain free when she sees you, so I will deliver her to your house at my earliest convenience. She won't be any trouble and she doesn't eat much.

Thank you for your assistance.
Sadly, her doctor seems not to have a sense of humor.  Maybe it's because they don't joke like that in Bangladesh, which is where she's from.  She thinks my mother is feigning pain to get my attention...but I was watching her in pain when she didn't know I was there and she's definitely in pain.

But I'm done.  No more will I rush to take her to the doctor again.



Maybe.

Tuesday, September 13, 2016

Pain


I went to Atria this afternoon to get laundry and my mother was "not good," she told me.  It wasn't a brain thing this time, but she was in great pain radiating down both of her legs.  She could hardly walk.  I gave her a couple of Aleve, hoping that would help the pain, and I called Kaiser.

It was too late in the afternoon for them to give her an appointment today, but she has one for 11:30 tomorrow.  Of course, if things go the way they usually do, I'll arrive at Atria and she will be just fine with no memory of the pain she is in today and then I'll have the dilemma of whether to keep the appointment, knowing that her doctor can't diagnose a no longer existent pain or cancel it and hope the pain does not return.

The other problem is that her pill container has disappeared.

Last week, I brought the pill container that has her doses for each day in the week.  She still had two days left in her old container, so I left that one for her to finish and left the other one as well.
When I returned two days later, all of the pills were gone out of the new container.

But the thing is I couldn't be sure that I had brought a filled container.  She has two of the same color and maybe I had mistakenly brought the empty one.  (With the signs of my own early dementia, it would not have surprised me). So I didn't stress about it because when she empties a container, she leaves the lids open, and these were all closed and knowing how she hates to take pills, I couldn't imagine her having taken them all in 2 days.

So I brought back a new pill container, which I KNOW was filled, but today, when I went to check on whether she had been taking her meds, the container was gone.  I looked everywhere, even in the freezer. I checked every drawer, cupboard, medicine cabinet, linen closet and her purse.  It doesn't do any good to ask where she put it because she can't remember that she takes pills at all.

So I decided that the time has come to have Atria monitor her meds.  I have a note in to the coordinator to find out how we go about getting that started.

In truth, it will be a relief for me and I won't worry about whether she is taking her pills or not.
By the time I had done all I had to do, and had finished checking all the drawers, my mother had gone back to bed, moving very slowly and painfully.  I told her I was going to go and that I would be back tomorrow to take her to the doctor.  She said she felt like she wasn't going to get out of bed.  I told her that was probably a good thing, then she asked "but what if I have to get up?"  I told her to get up, then.

I stopped at the front desk on my way out and explained what was going on and that we had a doctor's appointment, but asked them to check in with her throughout the rest of the afternoon.

I don't have a clue what I will find when I go tomorrow.  If she is still in pain, I suspect I will have a battle on my hands because I will insist that she let me push her in a wheelchair out to the car.

Every day is a new adventure.  I ache for her and it is so frustrating being able to do so little for her.

I also printed out two photos from her birthday to show her, one of herself and Ned with the birthday bouquet he brought her and one with the two of them and Walt making a toast with wine for the birthday.

The first thing she said was "You know if I met her on the street I wouldn't even recognize her."  When I told her that the woman was HER, she didn't believe it.  Then I said something about Ned and she got this blank look and said "Ned?". I don't know if anything clicked when I reminded her that Ned was her grandson.


 

Sunday, September 4, 2016

Jim

I reminded my mother today of the night we called the police at the request of a kid who used to bully our kids all the time.  He said his father was beating his mother.  "Call the cops, please.  Tell them it's Jim.  They know me."

I told the story slowly and, since this was a good day, she seemed to be following it and remembering things, to my amazement.  I was telling her that after that evening, I realized how badly Daddy had wanted a son and how his life might have been different if he had daughters.

When I finished she said "Is he still alive?"  I said "you mean my father?" and she said "No...the guy you're talking about."

owell.

Tuesday, July 26, 2016

A note from Jeri

I had a long chat with Grandma today.  Since you're talking to therapists about her, I thought you'd like to hear about it.  It was unlike any conversation I've ever had.

It started with the usual mindless chitchat, and then a question she asks me a lot: "do you have a boyfriend?" and my stock reply is "it's worse than that, I'm married."  Usually that leads to me gently reminding her who Phil is, or not, and us joking about it all, and then she drops it and asks me what I've been up to lately.

But not today.  Instead I got "What??? You're MARRIED?" And then 15 minutes of her going on an on about how she couldn't believe I got married and didn't tell her, and how hurt she was, and how she might not be able to forgive me, her favorite grandchild, how could I do this to her, on and on for FIFTEEN MINUTES.  I didn't try to correct her; I never do.  I just played along.  But I started to really worry that this new thing was permanent, that now I've hurt her and we will never be the same again.  I said a lot of "I thought I told you, maybe you never got the invitation I sent" kind of things.  It was friendly and joking by the end.  But what surprised me was how she did not let it go for so long.  There was never that moment when the conversation stops and she starts over, like there usually is.  And she did not once ask when she was going to see me.  

So that was interesting.  I hope she's okay.  It's sad that this very lucid conversation would make me worry.

Sunday, July 24, 2016

New Quirks

I decided we should not all go to Atria yesterday, especially not the grandkids, who don't really know her and she doesn't know them.  I was afraid too many people would be too overwhelming for her, so just Tom and Ned went.  Apparently other than answering the door in her bra and having to be asked a couple of times to put on a shirt, she was more the "old normal."  She even knew Jeri when Jeri called while they were there.

Today I went over to pick up her laundry and see how things were.  Again, she was more the "old normal" though the feeling that "something is wrong with my brain" seemed to be stronger and she spent a lot of time holding her heads in her hands..

But at one point we were in the middle of a conversation and suddenly I realized her eyes were closed and she was not aware I was there.  I thought for a minute she had died.  It was only a few seconds, then she gave a startle-like jump, looked around like she didn't know where she was and then was fine again. This happened 3 or four times while I was there, once it was like she froze in place--her eyes were open, but she was "gone" and then jumped and was back again.

I'm wondering if she is practicing dying.  She says it feels like her brain wants to leave but she doesn't want to.

I have written to make an appointment with the resident services director to talk about this new quirk and also what her options for additional care at Atria are...and how much raising her care level will cost.

Friday, July 22, 2016

Worse day

I only stayed 30 min at Atria today.  I had to get out of there because I couldn't stop crying and she hadn't noticed that.  Waited till I got to the car to break down.

Jeri had sent her a pacage, c/o me, and I brought it to her.  She opened it and had difficulty reading the card (she has difficulty reading these days) and didn't say anything about it.  I was videotaping it so I could show Jeri her reaction.  Fortunately the video is too long, because it's also too depressing.  She took the picture out, looked at it and said "who are these people?"  I told her it was Jeri and Phil and she said "Oh...I don't recognize her."  Later she picked it up and said "I don't know these people."  I told her again who it was and she said "I guess I never met her."  That was almost the worst for me because no matter how bad she is, she always knows who Jeri is and always asks when she's going to see her again.

She picked up the note I had left for her yesterday, saying I'd been there an hour but she was sleeping and that I would see her today.  It's signed "Bev."  "Bev," she said.  "Who is Bev?"  I said "I'm Bev" and then asked her if she knew who I was.  She got this blank look and said "No I don't."  I said I was her daughter.  I thought she understood that until later she was very vague and I said "Do you remember who I am?"  She said "Well, we're talking and you told me you're my daughter and I believe you, but that means nothing to me."

Then I mentioned Fred and there was no recognition.  I told her he was her husband.  Still no recognition.  I went and got his picture and showed her.  She said "Well, he looks like a very nice man, but I have never seen him before."  I told her again that he was her husband, that they'd been married 18 years and that he died of cancer.  She asked how long he'd been dead.  I said "He died before David, so more than 20 years."  Then I said "Do you know who David is?" and she said no
.
I had also brought her a photo of her and her parents, taken in Inverness when she was probably in her mid 30s (I have posted pix of Karen and me with our grandparents on the same day).  She did recognize her mother and father but said that if you took her out of the photo, she wouldn't be able to recognize them.

Somewhere in all of this, I started crying and knew I was on the verge of losing it, so I left, feeling bad because she was sitting there trying to "figure out how I'm going to live with all of this."

I told her we would see her tomorrow with Tom and the girls.  She didn't have a clue who I was talking about.  She doesn't know Tom is her grandson.  I'm wondering if we should even go, but we will.  She likes little kids -- or she did -- so the girls in a short period should bring a smile to her face, and the girls need to have exposure to her so they will remember.

This is the worst day with her ever.  My only hope is that tomorrow it will be a little better, since it does seem to come in waves, but today I just want to sit in a corner and cry.

I wish I still drank.