All The Things She Said

Well not ALL the things she said but at certain times I felt the need to jot down some of the things that she said to save for posterity. I will relate some of them here. Keep in mind that these quotes are taken from a period of several months during the latter stages of the degeneration of a person’s cognitive impairment. Sometimes clear and lucid, other times making no sense whatsoever. Some are lengthy, some very brief. Also keep in mind that this person is enduring multiple sensory hallucinations; that is to say auditory (hearing things that others do not hear), visual (seeing things that others do not see) and tactile and olfactory (feeling things and smelling things that others do not feel or smell).

I did not make note of the dates on most of these so I can’t relate to any chronological order in which most of them were made. Also many of the notes were scribbled rapidly and I will do my best to decipher my scrawls and relate them verbatim the best that I can. “Someone” would be very irate if they knew I was doing this. She would say, “That’s stupid - those people are stupid.” (All the rest of the people in the world) “Talking to strangers - that’s stupid. (What we do or say) It’s none of their business.”

Anyway I think it has some value, perhaps not, time will tell.

Quotes:

“I don’t understand you…are you really a person?”

“So you took ‘em like this - poop pop pop - OK look, I’m gonna pull this up and you’re gonna do it. This is no good (pants) - when I say I want this that means I want it not krebble in a pile of skid. Oh God, go away, you are an idiot. You’re gonna have to do it in four parts then and then sew it together.”

(There was a large, heavy, down comforter normally on her bed. The predominate color on one side of it was red. Many, many times she would tear it off and place it at other odd places around the house. This next quote relates to a time when it was piled in a corner of the bedroom on the floor.)

“I walked into my bedroom and the comforter and something made me say, “Hi Dad.” I don’t know why I said that, maybe I’m going to die. I’m not trying to make you feel bad, I just don’t know why that came to me. No I don’t feel like I’m going to staff (?) but I miss my father. Do you ever think of all of us and remember how we were? And uh…the red in the comforter reminded me of when Dad went to the store…how I walked in to Dad’s office - he’s working on something and I said, “Hi Dad.” I’m not crazy, I just like my Dad. (crying) And I always liked you cuz you were my best friend. Don’t worry I’m not gonna croak but maybe God wants me now. I know my God - He’s always been good for me - gave me great kids - it was just a dumb thing that happened - I dunno.”

Funny stuff -
“Are you married? I like you. Do you have a car?”

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She once asked roommate Babs, “Do you have a boyfriend?” Babs replied, “No I don’t.” to which Dee said, “ I have a boyfriend, you can share mine.”

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On a Thursday in late Sept. or mid-Oct. 2008
One of her other grown sons, “Joe“, had been staying with us for a while. First while recuperating from a bad staph infection and then later because he had no place better to stay and it was also great to finally have two able “bodies“ on board. For a time at least this allowed me to leave the premises periodically for errands, etc. Joe had gotten a job and on Thursdays we would all go in the car and take Joe to his job office to get his paycheck. We had done this several weeks in a row for a month or two. Well, this day we got her all ready; clothed and shoes on (shoes were always a problem). I went and brought the car around, closer to the front door so she wouldn‘t have that far to walk.

We started to assist her walking to the car and I don‘t know what got into her head but all of a sudden she vehemently refused to get into the car. Maybe she thought we were “taking her for a ride to The Naughty-girls Home.” Anyway, after several moments of pleading and prodding we finally gave up. Joe would take the bus another day - tomorrow. With Joe on one arm and me on the other, we turned back towards the front door and started to take her back inside. Suddenly she goes dead-weight-limp on us and collapses down to a heap on the sidewalk. We panic, can‘t lift her and she offers no cooperation so I run in the house and get a pillow and blanket.

I come back and look into her eyes which looked like they were rolling upwards.

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I grab my cell phone out of my shirt pocket and hit 9-1-1. The fire department medics arrive first, about five minutes later (what sweet guys). I should mention at this point that Dee‘s cognitive impairment by this time had gotten to where she could MAYBE tell you her name but there was no way she could tell you what day or year it was or what city or state she lived in. So the medics get there and with her still sitting on the sidewalk they begin their pre-evaluation. One took her vitals and another began asking her questions. I‘m not sure but I think I told him what her name was.

He asks, “Dee, do you know where you are?” She says, “Sure, I‘m right here.”

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I thought that was hilarious. Subsequently she was transported via paramedics to the hospital and admitted to the ER. I had to assist in getting a urine sample there and that’s a whole other story. “Clean-up on aisle five.“ Anyway after a few hours the Doc says that she seems OK and “there’s nothing that a stay in the hospital could do for her.“ Towards nightfall we get released, I assist her down the hall and out the front door and - get this - she follows me out to the car in the parking lot WALKING UNASSISTED, we get in the car and drive home uneventfully.

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Not so funny stuff -

Wandering and the saddest thing I ever heard…
It’s a common occurrence in the later stages, for the person suffering AD or dementia to “wander.“ This, of course, is highly undesirable and could be very dangerous. There are electronic devices available to alert those who are caregiving in the case of wandering loved ones. Long-term Care facilities have special “lock-down” units to accommodate those who tend to wander. It’s also common for the person with AD to hear voices. Many times these voices are those of long ago deceased parents or relatives.

Dee never was one to wander much. It was my thought that she so feared anything outside of the front door that she dared not go beyond it alone. Although she did wander one time out of the front door and down the sidewalk as far as the driveway (about 25 feet). It was there she met the gardener and burdened him with the story about these two men inside who were being mean to her and asked if he could help her. He didn’t understand a lot of English and her English was even harder to understand. So very quickly, with her standing there in her underpants, Joe and I gently coaxed her to come back inside, convincing her that we were no threat and were really on her side.

She would sometimes wander throughout the apartment late at night, often talking to her imaginary associates; occasionally becoming very belligerent with them. She would also often sit up in bed in the middle of the night with a start, saying loudly, “What?“ She would usually say this a few times; I’m sure it was in response to an auditory hallucination of her mother calling her, i.e. “Dee, come home now, it’s time for your piano practice.“ or, “Dee - come home, time for dinner.“

The saddest thing that I ever heard and hopefully, this will be the last time I ever think about it again was when she got up out of bed one night and was wandering around the apartment, dragging her blanket behind her. I was awake of course, and heard her cry out in a soft, wistful voice, “Mommy? ……Mommy?“
This just broke my heart and still does. I hastened to her side and did my best to comfort her and help her back to bed. My salvation now is to quickly think the thought that she and her Mommy are happily together now. That makes the memory just slightly more tolerable and that’s all there will ever be said again about that.

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Other not so funny stuff -
(Dated Saturday morning, March 15, must have been 2008)
“What’s going on? What the hell is the matter with you? Get out of here you dirty rat. Why did you do that to me? I don’t wanna go anywhere. They’re mean. These men were awful - they killed me - I’m afraid. It’s people who do that - they hurt people. I don’t like that. Will you stay by me? I don’t have anything there when I’m with you. Did I hurt you? No? Oh good. But I’m all cold now. I was silly on h (?). I said I was bad.”

(This next one is very graphically garbled but I’ll do my best.)
“Did I give you that thing yesterday?“ Do you want the rest of it Honey? (a cigarette)
“They should be up there - don’t the kids get more? Do you want to put this together? Didn‘t you want to put a makalaka laka there? Little tiny things - cute - can I look at it?” (my notes) “How do you get that for here - I never got that. Can I make one of these?” (a cigarette)
“Who‘s that?” (a gardener outside making noise). “I can’t do it cuz it doesn’t work for me - you know when you go through? Why do you always do that?” (write notes)
(Takes the freshly lit cigarette out of the glass ashtray and places it on the cloth placemat)

One morning I’m awakened at 3am with, “Sir, can you help me?” Apparently she had gotten up to pee, taken her panties off completely and had put them back on with both legs through one leg-hole and pulled them up to her waist. Obviously this is uncomfortable and very tight fitting to say the least…she had done this a few times before. So I helped her arrange them correctly and we were good to go. She thanked me.

Later I’m told that, “I never usually ask men, usually I just say “get the feck out of here”.”
“Why are you doing this to me?…How can you do this to me?…You never loved me…You never loved my children…You only wanted my money…Don’t come in here please…(in the bathroom where I often assist her with toileting)…Will you take me home?…I want to go home…Get out of here, you’re so mean…You have never done anything for me…I never want to see you again…You’re a monster.”

“My beautiful man, I love you so much…I need you…I can’t live without you…This is perfect…I’m so happy…You’re so kind, I don’t know why…."

(Talking for the first time candidly and lucidly about Alzheimer‘s Disease)
“It’s such a horror…who does this to me?…what is it?…I know who it is…it’s that bitch…(one of her son’s girlfriends?)…I hate having people feel bad for me….It’s that bitch and she goes around laughing, laughing, laughing…Can I have something sometimes to help people? (she likes to help people, especially children)…It’ so sad…can you help me?…”
(“You know that later you won’t know who I am.”) (weeps) “Am I going to die with this?” (“yes“) I’m not going to be lovely…I wonder why I left everything…well, maybe God wants me to go…I don’t want to go but, you know…oh well. I wish I had big fingers. I think I’m ready, I really do. And u know what?…when our friends go before us we get mad at them. I wish I had much more left…don’t you?…you’re beautiful though…I love you. Is that OK to say? Don’t go. You’re so kind…thank you very much…thank you for loving me…I love you. I’ll have to see you later maybe…I don’t want to go without you…you’re my best friend. I hope all my friends remember me. I know that I was just a little snot sometimes…but I don’t do it.”

“Jeepers. I still feel that all my friends are here and why am I going somewhere? I’ll try to do everybody. I don’t want to live here. I really don’t…cuz I didn’t like it before. We never have all the friends we want… all the girls and all the boys…Right? I think I gotta poop. It’s not fun. I love you…I hope you are nice to me… I know you will…I’m gonna get you because you’re mine. I’ve always looked at you and I’m so happy. Can’t I have a little time? You’re so cute. You’re my pal.”
(“The good part is all your friends will be there… your brother, your mom and dad.…the bad part is leaving all your friends here.” ( mutual weeping). “Maybe I only have one day…I dunno…but I want to be with you. Oh God. Oh my God, look at that man…you’re my honey…I love you…do you love me? Oh gosh….you’re my boy…remember that…I love you so much. Maybe I’ll be alone….(“Not as long as I’m with you.”)…I want that. Maybe God’s playing a thing with me. But if you are you and I am me then we're good…we're better than anybody. Thank you so God. I think my father did (had) that, you know? You make me so nice…thank you God. You’re beautiful…(“So are you.”)…no I’m not but thank you…I don’t want to live without you.”

“I wish we could get out of here.” (This later came to indicate intestinal discomfort followed by a hasty trip to the toilet - sometimes making it there, many times not.)
“Did you ever taffle the fiddle git it? - Oh they’re beautiful.”

(While attempting to assist donning a sweater with very little cooperation)
“ I wish you’d stop have him do me not.”
“Just like a puke fark…I couldn’t do that - it just went down in my feck.”

There are just a few more but they’re too garbled to interpret.

And the very last four words that she uttered before slipping away into unconsciousness. Looking directly at me with those beautiful brown eyes and speaking clear as a bell…

“I love you forever.”

Jay