Saturday, February 27, 2016


My floor use to be a nice, quiet place There was enough staff to care all of us.Things have changed drastically in the seventeen months I have been here And, not for the better.

This facility is understaffed. Staff come and go regularly. I have been told this is common in all facilities. The issue I have is that  new residents keep being admitted to this floor even though short staffing is an issue. During the day it's not as bad as the overnight shift. There have been nights when there has been just one aide to care for all of us. This is not fair to aide or the residents. How can one person possibly provide adequate care to all of us? The aides are overworked and tired. The situation has improved, but could be a lot better. 

This floor has become a scary place. Sometimes I don't feel safe. They have moved a husband. and wife, who both suffer from Alzheimer's Disease ,to my floor. She screams and cries as if she is being murdered. He bellows and curses. One night, last fall, he was hollering and banging in his room. It was midnight. This morning he was bellowing at five-thirty. He got confused and threatened me once saying, "You'd better get of my room or I'm coming in there to get you." I was in my room minding my own business. He thought that my room was his.

I need to have my door open at night. I need to see into the hall. I was the same way at home . My bedroom door was never.closed. Even when my door has been closed, I can still him hollering.

Alzheimer's is a terrible disease. I know because it runs in my family. Having said that,, it is not fair to me or my fellow residents to have them on my floor. They take time away from the rest of us who need care too. I am afraid if something's not done something serious will happen because the man gets very agitated and mean. He has already tried to throw a trash can at aide. There is also a resident who has tried to come into my room. He suffers from a brain injury. All three of these individuals need to be in a secure unit.  As of this writing, nothing has been done. All I hear are empty promises from the staff/ My family  does all they can. Calling almost daily and meeting with the staff as well. 

Does someone have get hurt for the staff and administrator to realize that there are some serious issues on my floor that need to be addressed?

This post is a plea to the administrator to take action now.  If this is my "home" as everyone here tells me, I deserve to live in a quiet place that is free from fear.

Thursday, February 25, 2016


I have always watched my weight. I wanted to make it easier for anyone assisting me.

My mom never denied me anything, but she did limit my desserts. She could not have cared for me, by herself, until the age of eighty-seven if she hadn't.

The stress of my mother's illness and death caused me to lose a lot of weight. 

If a caregiver told me I was heavy, I  try to get my weight down/ Intellectually, I knew the caregiver did not mean that I was fat. They meant that I was heavy because I was unable to assist them when they were transferring me. I kept my weight down  hoping it would make things easier for them.

I try to eat healthy. A lot of fruit and salads. I love yogurt too.  I have gained some weight. However, I am still a little under weight for my height. I  am a small person. They tell me I am doing okay.

When I got here,  I would notice what other residents were eating.  I would wonder how they could eat all the carbs and desserts that they did .Didn't they care about eating healthy? I am embarrassed to .admit I was judgmental. I was also a hypocrite.

It's not easy living a facility. It can an extremely frustrating and stressful place. Some days, eating may be the only thing a resident has to look forward to. Food is a constant, food brings comfort. Food may be the only source of comfort some residents have.

I love junk food. I love desserts. There are days when I am so frustrated here that all of my thoughts of healthy eating go out the window. On those days I eat ice cream and whatever I want because I know ice cream and other desserts will make me feel better.

It's not easy for someone with a disability to keep their weight under control. No one know that better than I do.

Everyone chooses the way they want to eat. Some days I eat healthy, some days I don't Either way it's okay.

Gotta go. It's almost time for ice cream!

Thursday, February 11, 2016


I saw this  quote on actor RJ Mitte's Facebook page. "A disAbility isn't a weakness its knowledge and strength." I knew I wanted to write a blog post about it.

There are still people who view a person with a disability as someone who is to be pitied, someone who cannot contribute. Someone who is inferior. The reality is that people with disabilities lead perfectly normal lives, yet we have to work twice hard to be accepted. The world we live in is not made for people with disabilities. We encounter obstacles everyday. They range from physical barriers to the attitudes  of people who judge us solely because of our disability. They judge us on the basis of what they see, rather trying to get to know the person we are.  In my opinion, they are the weak ones.  

We know about perseverance because of the rejection we have encountered. I read about a young man with Cerebral Palsy who was rejected approximately one hundred times before he finally got a job. I cannot imagine what strength and courage it took for him to continue to apply for jobs. He persevered until he finally got the job he deserved. I was told I'd never get a job, but I was determined. I succeeded by creating a position for myself. 

We know about responsibility. When I taught computer classes I was responsible for getting a substitute to  teach my classes if I was ill. If i did not get a sub, I  had to find time to make up the classes. I rarely missed class. I was only late once in sixteen years. I knew that my students deserved to get what they paid for. I did everything I could to make sure they had a positive experience in my class. 

We know about empathy.. People with disabilities have the ability to empathize with the difficulties others face. We face challenges every day. While everyone's challenges are different, if we can put ourselves in another person's shoes and think how we would feel, in their situation, then we can understand. I think this an important skill for caregivers to develop. No one knows what it is like to be forgotten in the bathroom without your call light until it happens to you. 

We know patience.Most of the time those helping us will do so when it is convenient  for them, not us.

We know about gratitude. When you have a disability and need assistance, you are grateful for things most people take for granted. I am grateful when someone answers my call light in a short amount of time. I am grateful that there is someone to get me out of bed, help me to the bathroom and help me dress for the day. I take nothing for granted. I say thank you all the time..

The word disability has the word ability in it. Don't get stuck only seeing a person's disability. Don't focus on what they can't do. See them as a person. Focus on what they can do. 

There are days when I am so tired. Tired of being one of approximately thirty people. Tired of making sure that my needs are met.  Tired of waiting. I have no choice but to keep going. People with disabilities are strong because of their disabilities. We face challenges. We persevere.  


Sunday, February 7, 2016


My power chair means freedom to me. it is almost seventeen years old. That's old for a power chair. I have resisted getting a new one because my chair has never given any problems. I have had parts and  batteries replaced through the years, but, that's it. I know people who have chairs much newer than mine. They are always having trouble with them. I did inquire about getting a new chair years ago. I wanted a chair as close to the one I am using as I could get. Because of a dispute between the  FDA and the manufacturer, they were not allowed to sell the chair until the dispute was settled.They tried to sell me other chairs. I was frustrated.  I wrote a blog post about issue. I kept replacing parts.

Lately, one of the wheels on my chair has been falling off. Sounds funny, but it can be pretty scary when I am going down the hall or turning a corner. The maintenance people here have replaced the bolt and it seems to be holding up  well, but I finally decided it was time for a new chair.

I spoke with my social worker. I learned that because  I am in a facility now, Medicare will not pay for a new chair or wheelchair repairs. It is a federal law. Medicare doesn't think anyone needs a motorized chair if they are in facility because staff can push them around. Medicaid will pay for a chair, but Medicare will not. It makes no sense at all.

The legislators who passed this law obliviously have no idea what its liked to have to wait for someone to push you from place to place. I do. Shortly after arriving here, one Friday evening, my chair stopped dead.  There was nothing that could be done until Monday, so the entire weekend, I had to wait for staff to push me around. They would forget me and I couldn't get to my call light easily. It was very frustrating. Thankfully, the problem was a minor one and I was mobile again on Monday. 

My chair is my only means of getting around independently I am able to leave the facility when I choose to and take public transportation to my destination. If I only used a manual chair, someone would have go with me.. 

I was told when I entered this facility that I could still have a life. I can, but without my motorized chair the quality of life will be significantly limited.

I guess Medicare is of the opinion that if you are in a facility you are sick. I am physically disabled, not sick. I deserve a life. i deserve to be able to keep rollin'   ..