Daisy Tales

What's Up With Daisy?

I met Daisy in the fall of 2000. As I look back on it I realize the agency I worked for was using me as a guinea pig. "Just a little dementia," they said. "The husband and daughter need a break. It will be like baby sitting."

As I would find out later,this was no ordinary dementia.

Flipping through my notes on Alzheimer's and dementia I remembered my best notes were in my head from prior experience. I had taken care of people with this sort of problem many times before. Mostly it consisted of keeping the client from harm, or reminding them to eat or put on clothes before they go out.

I rang the bell of the 2 story home surrounded by
large trees and dotted with small badly placed gardens. I looked more closely and realized someone had been planting weeds. Yes, weeds. There were dandylions and those purple things that grow along the highway...they were sort of just stuck here and there and were drooping for a lack of dirt and water.

No answer at the door...

Since some older peeps are real slow to answer the door I was patient and waited quietly. Just before I rang the bell again I heard the sound of a car pulling up the long driveway. Driving was a tense looking man in his 60's. Good looking though. In the passenger seat all I could see were blonde hair and hands. Hands waving first in front of the drivers face so that he had to push them away and next waving to me. I waved back.
Before the car could stop the passenger door flew open and I heard two voices.

One was yelling "Daisy, Stop!" and the other was saying "who are you?" The car came to an abrupt halt and the blonde woman bounded out of the car dragging an enormous brown leather purse behind her. She had inadvertently turned the purse upside down and now the contents were spilling out all over the driveway. A series of sounds came from the blonde ladies throat. Uh Uh Uh Uh. I would soon learn to pay attention to that sound.
It meant trouble or danger or oops.

Hello. I'm Jan from the agency. I announced as I watched the 64 year old woman crawl on hands and knees under the car to retrieve combs and lipsticks and life savers. The man eased out of his car slowly and said " I'm Ed and this", pointing to the ground,"is Daisy."

Nice to meet y...was all I got out before Daisy jumped up and stood about 4 inches from my face and said "I love you, You're a nice woman," and then gave me a bear hug.

"Thank you Daisy, you're ni...was all I got out again before she pushed the hair off my shoulders, used her index finger to push my glasses back up the bridge of my nose and said "your old".

"Do you want to see my wedding gown?" she asked. Oh uh OK I stammered, and Daisy was in the door dropped her purse on the hallway floor and half way up the steps before the screen door closed. "She moves like an adolescent I said to Ed as I tried to follow Daisy. It was then I noticed the weary apologetic look on the mans face. He said,"I am going to physical therapy and then I'll be back to see how it's going." He stiffly walked away and as I followed him with my eyes I knew something was wrong.

From upstairs I heard "Jan, I love you..."

I called after him and said "don't worry sir,
everything will be fine. He mumbled something
and shuffled out the door. Later on his daughter told me Ed had Parkinsons. I knew then I was in for the long haul.

"Jan! Where are you?" I'm coming Daisy.

Upon entering her room I again was taken aback to see a 64 year old crawling on the floor and in a snap she was up and in my face. "I want to show you my violin." 'What about the dress' I tried to say but she was emptying her dresser drawers pulling out velvet boxes full of jewelry that her husband had bought her for this birthday or that anniversary. Then she took off down the hall and I could hear her saying something about the safe in the den. It was then the training started to kick in. I needed to stop her from the runaway train of activity she was on. I spotted a family portrait on the wall and said "Who are these nice looking people?" Daisy stopped dead in her tracks, slowly walked over to me, looked intently at the framed faces on the wall and said, "Hell if I know. Want to see my wedding gown?"

More later.

Love, Jan

Daisy's Tales

Daisy's condition seems to be withering away her vocabulary as well as her memory. So to compensate she had a handful of memories, true or false, that I call 'Daisy Tales'. These are the stories that haven't succumbed to the destruction of her frontal lobe...yet.

Story #1:

I was born at "High Top Gardens." My father was in Germany and my mother worked for Mr. Rockefeller.
She played his organ...My father could make any color rose he wanted so Mr. Rockefeller brought him to America and he took care of his roses. My father married my mother there, at High Top Gardens and I was born and raised there..

Story #2:

I'm 64 years old. Do you believe that?
No one believes thats cause I have blonde hair.

Story #3:

I have 4 children. Ella was the first born. Next was Michael who lives in Telford. Then there is Sean who lives in SC on Pedestal Island, and last was Thomas who was born without a heart. So the doctors put four yellow pegs in his chest and he lived like that till he was 15 years old. Then I said "Thomas, we're going to the Mayo clinic because there was a dead fireman and he's giving us his heart...for free!

Story #4:

I've been married to the same man for 40 years.
That's a long time. I still love him and he still loves me.

~~~~~~~~~~~~

On one particularly aggravating day Daisy had recited her tales at least a dozen times and I was low on patience...pms

I started to recite the stories along with her word for word. She ignored me. Daisy got to her last tale and we recited together..."I've been married to the same man for 40 years. That's a long time. I still love him and he still loves me. Daisy then went on..."He f*cks me twice a week but I don't get anything out of it."

I love my job.
Love Jan

Daisy in the Supermarket.

With a few weeks of experience under my belt with Daisy I thought I was ready to take her out. In public.

I know what your thinking...and your right.

Daisy could not wait till the car is parked before bounding out the door and accosting the first person she sees. "Hi, I'm Daisy" she tells a young mother with a newborn strapped to her chest. "How old is your baby" she asks politely, but before the woman can answer she walks away and says "I can't stand here talking to you all day."

Inside, I take out our list and read the first entry.
"fresh chives".

Daisy dashes off to the produce department but this time I catch her and explain firmly that she will stay with me and not run away. She agrees. Daisy walks nicely beside me talking idly and loudly about this woman is too fat or that person is funny looking, or "I wonder if his mother knows he dresses like that"? Upon reaching the produce Daisy stands in the middle of the isle, throws back her head and yells

"DO YOU HAVE ANY FRESH CHIVES?"

Employees come running from everywhere and find her the chives as quickly as possible.

I read the second item. Cream cheese. So on the way to the dairy department I explained there is no need to yell, I will find the cream cheese. I could see the silver foil wrapper of Philly Cream Cheese as we approached the dairy case. I started moving toward it. I didn't get three steps away before I heard,

"DO YOU HAVE ANY CREAM CHEESE?"

I felt like I was in a store wide game of 'go fish!'
I then proceeded to race around the store picking up
the rest of the things we needed to make dip.

When we arrived home she showed me that she too was 'picking up' items.

5 votive candles and a six pack of life savers!
No receipt! Maybe next week will go better.

Daisy in Public.

Ella, Daisy's oldest child and only daughter had uprooted her husband and two young sons from their home in New York to move back in with Ed and Daisy. Ella's husband Rich was all for helping out his in-laws and the two of them were just the nicest couple. It wasn't an easy move for their two boys. Grandma Daisy was 'weird'. The youngest boy was terrified for the first few months because Daisy would steal from him. She would raid his piggy bank or take the food right off his plate. The older one tried very hard but he was mortified when any of his friends came over. Daisy had a tendency to talk inappropriatly in front of him and his buddies.

The stealing was the hardest part to deal with. It was very embarrassing but people seemed to see that there was something about Daisy, and it brought out the best in them. I would take her everywhere with me. It was great to have a job where I could actually do my own errands and get paid for it. And Daisy looked forward to it. I took her to my bank at least twice a week. She would always steal the free pens. I would let her keep one and put the rest back. She ended up with at least 50 Commerce Bank pens! But the tellers were funny and genuinly friendly with her. Because of Daisy I became very friendly with several of the women that worked there.

The gluttony was just a matter of herding her away from the refrigerator and pantry. If I wasn't paying attention or was in the bathroom Daisy would stand in front of the frige and scoop food in her hands and just shove it in her mouth. She simply could not stop eating.

Another difficulty was her total lack of tact. She would say anything to anybody. We were walking out of a CVS Pharmacy when she saw a handsome teen with his girlfriend walking in. Daisy grabbed him by his choker necklace that he had obviously made himself and asked if he and his girlfriend were going to buy condoms.
In the super market we couldn't pass the incontinence aisle with her yelling "I need some of those pussy pads"!
They were Poise Pads but she called them pussy pads. Loudly.
A rather large woman was sitting in a restuarant obviously having difficulty with her short skirt. Daisy announced (loudly) that she could see all the way up to that fat ladies cunt.

Daisy in the Restuarant.

There is a sweet little family diner in town called 'Lilleys'. Daisy and Ed were regulars there on Sunday mornings for years. They hadn't been there in a while though. Ed had been keeping Daisy in check by yelling sharply at her every time her behavior was inappropriate. It had worked well for a time but he knew he couldn't do that in public. People wouldn't understand. Needless to say they hadn't been out anywhere in a while. One afternoon Daisy an I were driving around doing 'errands' when we happened to pass Lilleys. "Oh there's Lilleys" said Daisy. "Éd and I use to go there every Sunday. I miss that place." I asked her if she was hungry (silly question) and she answered yes. I pulled into the lot
and parked. Upon entering, Daisy was baraged with wait staff and patrons.

"Hello Daisy" came from everywhere and "Where have you been hiding yourself?" was the question of the day. I was nervous about letting so many people crowd around her but she laughed and smiled and hugged everyone and then brought the place to pin drop quiet when she said, "Who are all you people? I just want a cheeseburger". Daisy sat down on the wooden cafe style chair and stuck her nose in the air. Then she wrenched all the napkins out of the dispencer and shoved them in her purse. Before I sat down I addressed the room. "Daisy has a condition which robs her of her most cherished memories.

Why, just five minutes ago she was telling me all about all of you and how she loved comming here." I then sat and accepted the smiles and well wishes for Daisy. Mrs. Lilley herself came to the table and told me to bring Daisy around whenever I could. And I did.

Daisy and the Cop

On Wednesday afternoons Daisy and I would lunch at Lilleys. It became part of a predictable day. Along with Daisy's glutony she developed a swallowing problem. So she would stuff and stuff and then sit there not being able to do anything but spit it out in her napkin. (and put the mess in her purse) So lunch time became a regimented dance of "pick up your cheesburger, bite, PUT DOWN YOUR CHEESE BURGER, chew, chew chew chew, ok now, swallow...go ahead Daisy swallow...look at me Daisy, swallow (gulp) Good! Now, pick up your cheesburger, bite, PUT DOWN YOUR CHEESBURGER, and so on and so on.

Everyone was pleased with her behavior most of the time and very forgiving the rest of the time. Like when she would acost the black patrons at Lilleys. "your black, but thats ok" she would say. "Gee. thanks" was usually the answer. I would then quickly apologise and gently lead Daisy away.

The diner was small enough that there was only one toilet in the ladies room so when nature called I would let Daisy go in alone. Sometimes I would let her walk there herself and she would say hello to people along the way. We were all subtle about it but we watched her all the way in & out.

On one occasion there were two well built policemen sittng at a table near the ladies room. They were young and solid and very cute. As she came out of the ladies room she stopped and put her hand on one of the young officers shoulders and started telling them how much she appreciated the brave men in the police department.

I had already gotten up and was moving slowly toward them. But it was crowded that day and I didn't want to seem over protective. But as Daisy was expressing her gratitude to the boys in blue her hands were stroking and kneading the guys' shoulders. Then her hands went to his chest and I couldn't get ther fast enough. The cop was about to be molested but he was trying to be nice and the whole room began to smile and watch me moving to intercede.

When I got there I wrapped my arm around Daisy's shoulders told the cops to have a safe day and whisked Daisy back to our table. Daisy protested, "I was just, just just..." You were just feeling up a cop!" I said too loud and the room fell into laughter. Daisy thought it was funny too.

Later the evening when Ed came home he asked, "what did you girls do today? Daisy responded "oh, we did a jigsaw puzzle, made more dip, read the paper and I felt up a cop." Ed looked at me with eyes wide and I just shrugged as if to say "where does she come up with this stuff".

Where did Daisy Go?

The winter was rough. There wasn't much to do and the days dragged by. Daisy wasn't feeling well. She had caught a cold and I had to follow her with tissues because she had no idea when her nose was running. I had been in a funk as the days grew shorter. Because of my self involvement I didn't notice the changes right off the bat. I was reading Daisy an article out of the news paper and it was very funny. I don't know if Daisy 'got' jokes anymore but she would laugh when I laughed. I laughed. Daisy did not. I read the punch line again and laughed. She didn't even smile. I said "Daisy, don't you think that's funny"? "Yes," Daisy answered and looked at me and did something. I thought she was going to growl or spit by the way her face looked. But it wasn't that. She was trying to smile. Daisy fought with her lips this way and that but there was no smile. She was physically unable to do so. This was not news I wanted to break to Ed so I discussed it with Ella's husband. It was easier talking to someone who wasn't blood related. This guy was the best. Rich was a great husband an excellent dad and just an all around good guy. When his father-in-law Ed called him and told him of the trouble he was having with Daisy he and Ella and their two boys made arrangements, gave notice and moved back into the house to help out. It was just Ed and Rich and Ella for several years before they decided they needed me to help. So Rich had become the one I could talk to and I knew he would know the right way to tell the family. His first reaction was, "oh watch this, I can make her smile." He started to sing this silly song from a connivance store commercial and Daisy stood up and walked right toward him. He held out his hands as if to dance with her. They always danced together. She walked passed him down the hall and out the door in the snow with no coat. Rich and I kept a close eye on her for the next few days and when there was still no smile we told Ed. After a few more days of denial they called Daisy's doctor.

Diagnosis:

Pics. A rare form of dementia affecting only the frontal lobe.
Symptoms include:
short term memory loss
heightened sexuality
aggressive behavior
kleptomania
gluttony
loss of vocabulary
loss of speech
inability to swallow

A Tortured Soul

I never really thought much about what that really means. 'Tortured Soul'. It could mean someone who was so incredibly evil in life that they now suffer in some dark painful afterlife. But the words 'Tortured Soul' conjures up feelings of sympathy.

I think a lot about what it means now, because I know one.

I know a tortured soul.

Daisy.

I've been helping Daisy's family cope with her dementia for two years now. I have stood by them through her shop lifting, her incontinence, her gluttony, her endless wandering, her loud broadcasts in public that she needs her pad changed and telling African Americans that 'it's ok' to be black.

For the last few months Daisy has lost her ability to smile or cry. She has lost 80% of her vocabulary. She shuffles around like a zombie and always has food on her mouth and clothes. Spending a day with Daisy is quiet now. I can spend the better part of the shift just watching her sit and stand. She sits, forgets why she sat so she stands, with no clue or memory of why or when. So she sits...and so on. This can go on for hours.

The family is burnt out. I am burnt out.

Daisy will enter a 'facility' tomorrow, where she and other tortured souls will shuffle and wander as far as the locked doors the chain link fences and the medication will allow.

So long Daisy. It's been an honor.
May you find peace, in some form, soon.
Love, Jan

The End

Daisy didn't last long in the facility. She was so unmanagable for the staff there that they sent her to the hospital for more 'observation'. While in there she developed pnemonia from aspirating her food. A few days later they sent her back to the nursing home and she stopped eating. A feeding tube was out of the question. Daisy would have just yanked the tube out the same way she used to yank the curlers out of her hair when I would try to fix her up.

Daisy passed away under hospice care and the loving eyes of her whole family. and me.

This story is therapy for me. Ongoing therapy because I haven't been able to come to terms with what has happened. I haven't visited the family. I didn't go to Daisy's funeral. I still feel I let her and the family down. I can't do anything without thinking of Daisy and missing her terribly.
She went everywhere with me so even my everyday errands are stuffed with Daisy thoughts.

This story can't be finished until I heal.

"Till we meet again, old friend"

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