Sunday, May 28, 2017


"I watched the movie Sex and the and the City yesterday. There is nothing like spending a Sunday afternoon with Carrie and Big. I had dinner with my neighbor at the restaurant down the street. Today, my caregiver is bringing KFC boneless chicken/  Then, we're watching  The Guilt Trip. Happy Memorial Day, everyone." My Facebook post from May 27, 2013.

This post came up on my Facebook news feed yesterday morning. What a difference four years make. 

Four years ago my concerns for Memorial Day were if I had enough money to get boneless chicken and the Reese's Chocolate Pie from KFC. This year, I wonder if I will get my shower on Monday because my regular CNA will be off for the holiday. 

Four years ago I was able to get in my van and my caregiver would drive me wherever I wanted to go. Now,  I cannot sit in front of the facility.unless I have someone with me.  It is true, I could take Call-A-Ride, but that is a hassle too. When I have a new aide, they do not know my routine. With all the new residents on my floor, sometimes, my routine cannot be adhered to.  I may not always get the times that I request using Call-A-Ride. Last week, I  canceled an appointment because I was afraid I would miss dinner. I guess the facility could have saved my dinner.  Understaffing has affected the dining room too. I didn't want to risk it. No one will help me to the bathroom in the middle of serving dinner. The aides are all busy. I would need assistance because I would have been gone for several hours.

Four years ago I lived in a house. Now, I have one room. I am thankful for my own space. My privacy means everything to me. I pray that it is never taken away.  My room and my writing are what keep me sane here.

Four years ago I knew approximately how long it would be before someone helped me to the bathroom. Now, if no one is answering my light, and I really need assistance, I call my family. My brother is the one who makes sure I get the help that I need. 

Four years ago, if I needed to see my doctor I made an appointment and went to see him. Now, I tell a nurse, but most of the time the message is not relayed unless I keep nagging. Nagging is exhausting.

Four years ago I didn't have to worry about whether or not a stand-up lift worked. I did not have to wait for my CNA to find a battery.The lifts and batteries do not work a lot of the time.We need new lifts. 

Four years ago I had a life. I was a volunteer. I went out on the weekend. Now, I  exist.  It was not much of a life, but it was mine. I have called Paraquad about some alternative safe living situations. The woman was supposed to email me information several weeks ago. She has not. I guess I will have to keep calling to get results.  Nagging is exhausting.

Freedom to me is things others take for granted. Going to the bathroom when I need to. Having an accident ts embarrassing and degrading.  Freedom is knowing that there will be an aide available to put me to bed each night as well as get me up in the morning using equipment that works, Transportation services that are not costly but will transport me in a timely manner. Having a regular writing job so I would not have to depend on my family so much. 

Tomorrow is a day to thank and remember the men and women who fought for our freedom. Think about the freedom you have. Think about the small things. Remember and be grateful.