A place for a resident like me

Here’s some background for those who haven’t kept up with this blog for the past three years: I am 62 and an incomplete quadriplegic. I have normal bowel and bladder function (most of the time). But I do deal with chronic constipation. I am able to stand with the assistance of one or two aides, but I cannot walk. Though my right arm has little function, I have some use of my left arm/hand. Even though I cannot feed myself, I can type on an adaptive keyboard, use a touchpad and control my power chair's joystick.

I have lived in nursing homes since March of 1996. Before that, I lived on my own in the community and private caregivers did my care. I had stayed with my parents until they died of cancer in 1982—within five weeks of each other. I was disabled at age 19 from a fall and sustained incomplete cervical spinal cord damage.

I have trained caregivers since the ’70s. In the ’80s I worked full-time through a government grant and trained people to be nurse/home health aides. I expected a lot from my trainees. But most of them said the little things I taught them made a significant difference to the folks they cared for.

I weigh 200 pounds, which is obese for my 5'3" frame, and I remain on a calorie-restricted diet. I have had breast cancer twice since 2007 and three times in my life. Presently, my treatment is a Faslodex injection (done by the nurses here) every four weeks. The shots are supposed to stop estrogen from assisting breast cancer cells to grow. But as most women know, doing without estrogen does not make you feel wonderful. So I deal with hot flashes and mood swings as best I can.

Since 1997 I have spent most of the day on my computer. Through this, my “window on the world,” I read, write, communicate, shop, do research, pay bills and surf the Internet. I was employed for four years part-time at my previous facility as communications coordinator where I did newsletters and other public relations.

When I used up my private funds, I went on Medicaid and my job ended. Going on Medicaid was the most devastating thing that has ever happened to me and it took a while for me to recover.

Last fall I was involuntarily discharged from the Southeastern Ohio facility where I had lived for 14 1/2 years. That was terrible for many reasons and it upset me greatly. Because of that, no other facility nearby would admit me. I had to move 70 miles northwest to a “behavior” facility.

The discharge was based on the facility's statement that they “could not meet my needs.” But my needs were met with strong advocacy on my part. Two aides assisted me to stand to transfer until I was required to use a sling lift six weeks before discharge. I was given a shower every day, at my request, until a month before I was discharged.

Doing my shower and getting me dressed is the most time-consuming aspect of my care. I need to be fed three times a day, toileted every two hours during the day and assisted to drink water.

To use my computer I have to be positioned. My left arm has to be strategically propped on pillows so that I am functional. After that I am pretty independent except when I need assistance to unplug a locked up computer, put paper in my printer tray or get a software CD.

I use dictation software so I write by speaking. Because of this, I can concentrate and write better when it is quiet. I also need time to think, pray and meditate.

I am honest and I say what is on my mind. Because of this I have been told I intimidate people. Unfortunately, some of those people have been nurses and aides. I have no doubt that when I am tired or grouchy I may respond negatively to others (including facility staff).

Though I am quadriplegic, I have feeling everywhere. Sitting for a long time on a shower chair causes my legs to hurt badly and become numb. That makes standing up afterwards much more difficult. I sometimes think it is impossible for others to understand how much I hurt because I am unable to change positions. (If you want to know what it’s like, the next time your hip starts to throb, stay where you are. Then you will have an idea.)

When I first went on Medicaid, I advocated staying in the private room. I did not think there would be enough space in a semi-private room for my computer and its accessories along with the other things I need to be functional. A past administrator decided to leave me in the private room. She felt it was good business and that it made it easier for me to do my job. Unfortunately, that policy was eventually changed by another manager.

One more thing: I am a crier. I do not necessarily cry daily, but when I am upset, I do the ugly cry. There is no private place in the two facilities where I have lived to go when I am upset. I also have a temper. It shows itself when I am in situations where I feel threatened or in danger.

I have always tried to find my place in the facilities where I have lived. I volunteered and enjoyed being an employee. Almost every day the facility staff laughed at my crazy sense of humor and enjoyed my gift of gab. They also knew where to come when they wanted an opinion.

I wonder how administrators out there look at taking a Medicaid resident who is 62 and still has her wits about her. Now that you know more about me, where would you put me in your nursing home?