Thursday, March 31, 2016


None of the regular aides showed up for the evening shift last night. Every one of them called in. There was just a nurse and a student nurse. When I returned from dinner I couldn't find anyone. Another resident needed assistance. Their light had been on for quite a while. No one had answered it. I called my family. My wing ended up with two nurses, one acting as a Med Tech, the student nurse and one aide. It was a little unnerving for a while not knowing where anyone was. Why did I have to call my family in order to get the help we needed? Sadly, in the evenings, and on weekends, this is a common occurrence. 

Easter Sunday, there was one evening aide to care for all of us. Monday and Tuesday evening there was one aide as well.(the same aide) Tuesday evening started out with two aides, but one of them went home. Monday night I was up until after midnight because I refused to go to bed with my hands and face had been washed and my teeth brushed. The night aide told me they didn't have to do this because of all people they still had to put to bed. A nurse finally helped me, but not until I had called the night manager twice. 

There is no continuity of care on the day shift. Every day I  have a different aide. Aides also come in late. This leaves floors with one or no aides until an aide arrives.

It was not always this way. When I entered this facility there was enough staff to care for everyone. Aides came in on time. There were always two of them. The majority of aides and nurses that were here when I got here have left.

This facility is run by a corporation. You can buy stock in that corporation. In my opinion, their main objective is to make money. New residents are admitted. There is not enough staff to care for all of us. The staff that is here is overworked. I'm sure that they feel underappreciated. Not only do I advocate for myself, I advocate for the aides too. When I have a good aide, I want them to stay. I let them know that I appreciate what they do for me.

When people from the State of Missouri were here things ran smoothly. There was more than enough help. It should be that way every day. Not just when the facility is trying to get a good evaluation.

The solution seems simple to me. Don't admit more residents than staff can adequately take care of until you hire more staff.

It is sad when the nightly question at my dinner table is, "Wonder how many aides we'll have tonight?" 

We didn't need a new chandelier or more pictures on the wall in the lobby We didn't need a new patio. What we do need is good care. Care is given by people who care. People we can depend on. I don't think that's asking for too much


Tuesday, March 29, 2016


I always write about the things that are wrong  with this facility. Things that need to be changed. What a difficult time  I am having here. I was going to write about problems again. I was going to give my ideas on how these problems could be solved. 

Something happened today that warmed my heart.  I wanted to share  it with you because I learned from it. I thought perhaps you could learn from it too.

There is a lady in housekeeping named Violet. She's from the Philippines. She doesn't speak English very well. She doesn't always understand me. She tries very hard to do what I ask. She has a good heart.

I had some chocolate truffles. I offered Violet one. She was so appreciative. The other day I got a sandwich for lunch, but decided not to eat it. I saved it for Violet. I knew she needed it more than I did  She is alone in this country. Violet works hard. I knew she would appreciate the sandwich. She did. She told me she loved me.She said when she went back to her country that she would always remember me.

I cannot imagine coming to a new country. I cannot imagine being all alone in that country. That takes tremendous strength and courage.  Strength and courage I know I do not posses.

We are not really supposed to give things to the staff. I don't want to cause any trouble for Violet. But, if you can help someone by doing even the simplest thing, like saving a sandwich for them, I think it is okay to break the rules once in a while.

I realize how lucky I am. The experience made me appreciate my family more . I am grateful for what I have. Whatever I want or need my family gets for me. Many people are not as fortunate. 

I will always remember you too Violet.

Sunday, March 27, 2016


I have many Easter memories. Getting all dressed up to attend the Continental Breakfast at church. The breakfast was followed by a worship service filled with music celebrating Christ's Resurrection.

I remember my hands being every color of the rainbow after all the eggs had been dyed.

The Easter Bunny didn't only leave baskets at my house, he left them at my grandparent's house too. How lucky were we? 

My strongest and most vivid Easter memory is watching my mother bake and decorate lamb cakes. 

Making the lamb cakes was a two-day process. The first day she baked them. The cake itself was a rich pound cake that was made from scratch.  The recipe made two. lambs. She made a double batch. 

The cast iron lamb mold was given to my grandfather. it is well over one hundred years old. The lamb cakes would bake to a golden brown. The biggest challenge was getting them out of the mold without an ear breaking off. Most years,  at least one ear was held together by a toothpick.

The second day was reserved for icing and decorating them. The icing on the face was made from powdered sugar. The eyes, nose, and mouth were jelly beans/ The body was iced with a thick white frosting,. The final step was putting the coconut on to represent the lamb's wool. 

A lamb was sent to the out-of-town family. In this case, she would start a few days ahead of Easter in order to ensure that the lamb reached its destination on time. 

There was always an extra lamb that would be given to friends with small children. The children did not always eat the cake, but they looked at that cake as though they couldn't believe what they were seeing.

I am not a fan of coconut. I don't how this happened but one year she put chocolate icing on one of the lambs without any coconut. It was delicious. It was the Black Sheep of our family.

The tradition of making lamb cakes was passed from my grandmother to my mother. It was important to me that this tradition not end with the death of my mother. 

If I were at home and my mom was still alive, a lamb would be the centerpiece of our Easter Table. My niece has the mold now. I am happy that she has made lamb cakes for her family. A lamb is the centerpiece of her Easter Table now. The tradition continues

Photos Courtesy of Brooke Grana Darnell

Thursday, March 24, 2016


I have written several posts about Cerebral Palsy Awareness Day. I have urged you to wear green on March 25th in support of people with CP. The focus of this blog is to raise awareness. I didn't really know what more I could say. .I didn't want to let the day go by without saying something. But what?

Several weeks ago,  I read a story online, about a young woman with CP. Her name is Erin Feeney. 

Erin is a twenty-four year old college student. More importantly, Erin is the author of  the book Kids in Toyland.  Her book is a collection of short stories that have an anti-bullying message. The idea for the book came from Erin's experiences of being bullied in school. She published it when she was sixteen years old. Her stories were turned into a short film. Earlier this month, the film was given a red carpet premiere at a theater in Erin's hometown of Naperville, Illinois .I  almost forgot to mention that Erin is unable to speak. She uses a computer and letter board to communicate. I forgot because that's not what's important. What's important is what she has to say. 

Erin and I began emailing each other after I read her story. I wanted to congratulate her on her success. I always enjoy talking with a fellow writer. 

Erin is writing a novel. After college she hopes to write for Disney.I have no doubt she will succeed.

Tomorrow is a day to show support for people with Cerebral Palsy. Wear green to raise awareness. Wear green to show that you see us as people first. Wear green to show that you believe  in us. Wear green. It's my favorite color.

Erin Feeney's book is available on iTunes 

Wednesday, March 23, 2016


I have a question for the aides who work at this facility. Why do you come into my room and turn my call light off without helping me?

It happened again  last night. I turned my light on after dinner, my aide came in, turned off the light, said she would right back. A half  hour later I was still waiting. I understand that I am one of twenty-four residents. What I don't understand is why turn off lights if a person has not been helped? I was told last night that if an aide comes in and talks to you, they know what you need, so there is no reason to keep a light on. I have also been told that if the state came in and saw a lot of lights on, the facility would be  in trouble. Or, they want to keep things calm in case family members visit. 

Lights should remain on until a resident's needs have been met. Anything could happen. There can be an emergency at any time. If no light is on, a person's needs can be forgotten. It happens all the time. What's wrong with letting people see how things really are?

During the night,  I needed to be pulled up in bed. I had slid down. I asked the aide to re position me. I was told I would have to wait for a nurse to help. Time passed and I turned my light on again. When they came in, about an hour later, I was told i was impatient. I was just trying to go back to sleep

A resident once said to me."If the aides had to go through what we go through things would be a lot different here " I totally agree.It may be just a job to many aides, but this is our life. We want to know that we matter. We put our lights on again and again after they have been turn off. We don't want to be forgotten.

I know the aides are busy. I will wait my turn, All I ask is that you please  leave my light on.

Tuesday, March 8, 2016


Chris Styles is the Speech and Language Pathologist here.. I always thought someone who worked in speech and language assisted a person who had difficulty speaking. After talking to Chris, I discovered there is much more involved in her job the just helping someone improve their speech.

Chis always had an interest in the medical field, but was not interested in becoming a physician. After working in several offices that offered physical therapy, occupational therapy and speech therapy, Chris decided to pursue a career in Speech and Language Pathology.

Chris received her masters from the University of Maryland. She worked in her first job for three years. Chris has worked at this facility for three years. Before coming here she worked at another campus of this facility for six years

Much of the work Chris does involves helping residents who have Dysphagia. This condition is more commonly referred  to as difficulty swallowing. Chris works with the dietitian to make changes in a resident's diet to help alleviate the issue.

Chris helps residents who have cognitive or memory difficulties following a stroke. If a person is experiencing difficulty speaking there are exercises to help. There are also exercises for someone whose tongue and lips might not be working properly,

Chris works with people who have voice disorders. If someone speaks too softly, Chris has them do breathing exercises. This helps them learn to use the muscles in their diaphragm. This gives them the ability to speak louder.

I don't see Chris professionally. I see her walking around carrying her laptop That's how she charts her patients. We talk almost everyday. She makes me laugh .

Chris makes sure all the residents she sees are able to eat comfortably without incident. She always. checks on them.

Chris helps the brain get the messages it needs to enable a person to swallow without choking. To think more clearly.To speak more distinctly.

Speech and language.  It's all in our brain.

Friday, March 4, 2016


One of the first people that I met here was the staff dietitian, Julie Boyer.  

I didn't really know what a dietitian did, so I decided to interview her find  out a little more about Julie and her duties here.
Julie has always felt a connection with the elderly. She knew she wanted to work with them.Not long after receiving her master's degree  in nutrition and dialectics, from Missouri State University, she got the job here. She has been at this facility for two years. 
When  a resident is admitted Julie does a nutritional assessment on them. This involves determining if a resident has any difficulty chewing or swallowing. They may have difficulty eating because they have dentures.  The findings of the assessment let Julie know if a change in a resident's diet will make eating easier for them. She asks food preferences too. 

Julie keeps track of the weight of all the residents. If a resident gains or loses weight too quickly, there weight is monitored more closely. If a resident has a feeding tube  she monitors the feeding tube and makes nutritional suggestions. .The aides and nurses keep her informed.

If a resident has Alzheimer's Disease, they may become distracted during meals. In this case, Julie suggests redirecting them back to the meal through encouragement. If they are still not eating, she .suggests giving snacks or a dietary supplement.

Julie meets with dietitians  from other facilities. The regional dietitian visits regularly to see how things are going.

Julie serves in the dining room. There are six dining rooms here. Julie used to have to oversee all of  them. Now, that job has been given to someone else. Julie can devote her time to all of her other duties.

She is always available to residents. Just to talk or to listen to any concerns .regarding food.

Julie is always busy. Never bored. She wouldn't have it any other way..