Journey Through Dementia

Journey Through Dementia

Sunday, April 24, 2016


Well, certainly had no clue that the Atria visit today was going to turn out the way it did, based on how it started.

I went over for lunch and of course the first red flag was that at 11 a.m., her newspaper was still outside her door.  

The second red flag was that she didn't answer the door for so long, I was digging in my purse for my key to go in and see if she was alive when she opened the door, obviously having awakened out of a deep sleep, wearing only her pajama top and underwear.

She said she felt awful, was disoriented.  The house was dark and she stood in front of the window and asked if I wanted her to open it.  I suggested that she might want to put on clothes--or at least pants before opening the window to the world. She lifted up her top, exposing her whole body to show me that she was wearing pants--underpants.

She sat in her chair and moaned about how terrible she felt, that she had no pain, and couldn't describe how she felt, but that she felt awful.  She was also upset that there were "new brown spots" on her arms, and, as she always does when she sees those old lady brown spots she kept hitting them and saying "stupid, stupid, stupid."  She was also very angry that she couldn't figure out what was causing her to feel so bad and she was obviously stupid because she should know what was causing it.

The last time this happened was when I took her to the doctor and the doctor asked me about her blood sugar levels, which I never take, since her A1C is usually OK.  But I decided to check her today, so came home to get the glucose monitor and went back.  She was now lying on the couch under a blanket and looked awful.  I tested her blood sugar and it was a little elevated, but nothing worrisome, at least not to cause this kind of a reaction.

She eventually got up and sat in her chair and we started talking.  The more we talked, the more "normal" she began to sound.  She was talking nonsense, but making fun of the deficiencies of her brain.

When I first arrived, it was obvious she was in no emotional condition to go to lunch, but she was sounding so much better that I asked if she thought she might like to go and get some food in her stomach.  She said she might like to try, so we walked down to the dining room, with her making jokes at her own expense all the way. Her usual table was full, so we took a table for two.  She ordered fruit salad and dessert and I suggested she have some vegetable soup too, which she decided to "try" (she doesn't remember that she has this every. single. day.)

She asked me what was for dessert and I told her it was carrot cake, at which she turned up her nose in disgust because she never heard of carrot cake and you don't make cake with carrots (though she did eat all of her cake and the ice cream on it too)

I had my back to the door to the dining room, so could not see people entering or leaving.  She found everything funny and we laughed a lot.  As people finished their lunch and began to go back to their apartments, she started flashing the finger at those who didn't turn around and tell her hello.  She stuck her tongue out at one man.

I assume nobody saw her do any of this, but she was having a wonderful time making fun of people.
When we had finished, we walked back to her apartment which, as usual, she wasn't sure how to find, but somehow she always does.  I think she was going to take a nap after I left.  She was unhappy that I won't be there tomorrow, but will wait until the next day to come (it's beginning to be that she expects me to come every day, it seems, but since she doesn't know one day from another or when I said I would come, I don't feel bad for skipping a day.)

I came home and took a nap myself, since I'd had so little sleep, and felt better about how she was feeling, given how she was when I first got there.  I really think that more stimulation of people around her would help stave off a lot of this, but since she refuses to go out and "mingle" maybe that's why she is starting to want me there every day.

It's something new every day...

Tuesday, April 19, 2016

The Panty Caper

I hated myself last night, as I lay in bed trying to get back to sleep.  I was remembering the joy on my mother's face when she saw me, how she sat next to me, clutched my arm and smiled and asked what was new. ... and then I remembered the look of deflation on her face when I talked with her about her underwear again.  Why didn't I keep my mouth shut?  Why did I have to embarrass her?

I resent doing her laundry, not because I hate doing things for her but because she day before she moved to Atria, she was doing her own laundry, the day she moved into Atria she forgot how to do laundry and refuses to re-learn.  Now, of course, her memory is so shot, it's no longer a refusal to do anything for herself, but it's truly a "can't remember" thing, but when I realized that she was going through more than a dozen pairs of underwear in 5 days and that I was going to have to start doing her laundry twice a week now, I just got angry.

It's not her's not her's not her why do I go out of my way to make her feel so bad about it?

She can't believe that she uses as many pairs of underpants as she does. She never pees in her pants (not true) and she only changes her underwear once a day.  So her explanation is that someone must be coming into her apartment, taking her underwear, wearing them and then bringing the dirties back to her laundry hamper.

Then she hangs her head in such an abject depression and says that she must be losing her mind.

Yes she is, but why do I have to keep reminding her of that, when if I keep things light I will have the mother who smiled so beautifully at me when I arrived yesterday...?  It's only laundry, for Pete's sake.

Friday, April 15, 2016


I stopped at Atria on the way home and that is always a downer.  In case you hadn't heard this, she's old.  That's why she doesn't do anything.  At one point she sighed and said "you don't know how lonely it is to have to eat by yourself."  I mentioned the hundred other people in the dining room and the three other women she eats with, but that doesn't count, I guess.  She laid a guilt trip on me for her loneliness and I'm afraid I just couldn't handle it.  I wasn't very nice, then she gets sad.  My only consolation is that she will have forgotten that by now.

I picked up her laundry.  I washed all of her underwear less than a week ago and there must be at least 15 or more pairs ready to be washed 5-6 days later.  She swears she only wears one pair a day, but I think that statement, like the one about her never going to meals (which Atria records show is not true) is a product of her imagination, not a fact.  I bought her 3 new pairs of underpants, which I brought to her today and she managed to lose them before I left.  Then she swore I never gave her any underpants.  I wanted to cry in frustration, but I just took the dirty undies home with me.

Wednesday, April 6, 2016

Family Drama

Well.  No cleaning got done today.  None.

The day started at 7:30 with a phone call from my mother, in great distress.  She felt terrible and she just didn't know what to do.  I told her I would be right over.

She answered the door, but staggered trying to get back to bed.  She kept slapping her arm and saying "stupid, stupid, stupid" because she didn't know how not to feel the way she was feeling and felt it was her fault for not being able to feel better.  She told me she hadn't eaten in 2 days and that she felt like she had nausea all over her body.  She also told me that she "tried to walk and would find herself on the floor."  I don't know if she has fallen or just never know which of her stories are accurate and which are things she remember, but never really happened.

I went to call the advice nurse at Kaiser.  During the twenty minutes I was on hold (the pre-screener told me that average wait time was 15 minutes but in this case it would probably be less time.  Yeah.  Right.) my mother staggered into the living room, hanging onto wall furniture to keep from falling over.

She sat in her chair for awhile, head in her hands moaning, then moved to the couch, she lay down, again slapping herself and calling herself stupid-stupid-stupid.

I finally got the advice nurse and she ran through all the possible symptoms for stroke and other obvious things.  She talked with my mother, who could speak clearly, but feebly and couldn't answer all the questions.  We decided she should see the doctor and made an appointment for the afternoon, but said she'd try to get her in in the morning and would call me if she was able to.
Then I went to the Atria front desk to check their records and miss "haven't eaten in 2 days" had 3 meals yesterday, which was nice to know.  I went to the dining room and got her a piece of dry toast and a cup of coffee.  She sat up to eat and it was like she was back to normal again.

My phone battery was running down, so since my mother seemed fine, I went home to recharge the battery so I wouldn't miss the doctor's call.  Good thing I did because the doctor called on the house phone, not my cell phone.  We changed the appointment to 11 a.m.

I went back to Atria and she was sleeping on the couch.  I let her sleep until she woke up and when she did she was disoriented and "sick" again.  But the one thing she was adamant about was that she did NOT want to see a doctor.  Maybe we could go tomorrow when she was feeling better.  I finally asked "do you like the way you feel now?"  That seemed to convince her to let me take her to the doctor.

The exam went exactly as I knew it would: She tells the doctor she's great, everything checks out fine.  She isn't dizzy.  She doesn't remember falling down.  She isn't nauseous, etc.  We went and had labs drawn. I told the doctor that my non-professional diagnosis was that there was an anxiety component to all of this. I think she woke up not feeling well and not sure what she should do about it, and that made her anxious so she called me and it escalated from there.  When I took charge and got on the phone with the advice nurse it took the onus off of her for "doing something."

I think if there is anything good that is happening with all these "I'm fine; she's just exaggerating" meetings is that Kaiser is finally beginning to realize that you can't trust what she says. (Today she could not remember her last name and had to ask me.) Never ask her a "when" question because she'll just make up an arbitrary date, and people will believe her. I never did believe that she hadn't eaten in 2 days and am so grateful that Atria keeps records on that!

While we were waiting for labs, I kept thinking what she really needed is to go to a nice lunch.  But she gets confused in the atmosphere of a restaurant.  She hates the noise of crowds because she can't understand what's being said and the last time we went to a restaurant she ended up so agitated that I realized it really isn't a treat for her to be taken out to lunch. I tried to think of a place where I would take her that she would like.

Then I came up with the perfect idea:  Osteria Fasulo, a little Italian restaurant out in Village Homes, which is like being on an estate of a big mansion -- lots of gardens with trees (she loves trees) and flowers.  They have an indoor eating area, but I asked for the patio.  The weather was perfect, warm and slightly breezy, and there were almost no people on the patio, so it was like having the place to ourselves.  From where she sat, under a grape arbor, she could look out across the grass to an eye-blindingly beautiful iris garden.

The birds flew in and around the arbor and she just loved looking at all the beautiful trees.

That coral rose bush was right next to our table and when the breeze blew the air was filled with the fragrance of the roses...a scent you get so seldom from hothouse flowers.

I didn't give her much chance to look at the menu because that always confuses her.  I told her I was having braised romaine with Dungeness crab and she decided that sounded good to her.  The woman who looks at every plate and complains that it's too much, actually ate more than I did and loved it.  She cleaned her plate; I did not.

When asked if she wanted to look at the dessert menu, she gave a hearty "SURE!" so we both had a lovely creme brulee.

By the time we had finished our lunch, you'd never know she had ever been sick.  In fact, she had forgotten she had been to the doctor.  She was bright and chipper and raving about what a lovely afternoon we'd had.  When I dropped her back at Atria, where she usually gets out kind of dazed saying that she isn't sure she can find her apartment, she was sure-footed and didn't complain at all about fear of finding her apartment.

The downside was that it cost nearly $100 and we had the cheaper things on the menu! I need to find something similar...or MAKE something similar where she doesn't have to walk (which her back pain prevents her from doing--and she refuses to use cane or wheelchair), but can commune with nature and not have an expensive meal in the bargain, but I can bring a picnic lunch.

But then, since her moods flip flop more often than a politician, who knows if a return visit would be as positive, You can only take her day by day, sometimes only hour by hour. But right now I'm feeling pretty good about how the day went, even if it DID take 7 hours!

TOMORROW I'll get back to cleaning.