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A place for a resident like me

May 23, 2011
by Kathleen Mears
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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.

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Ms. Mears,
I think it is incredible how open you were in today's blog. Thank you for sharing such personal information with your readers. I always enjoy your blogs.
Unfortunately I don't think your experience is unusual. In my experience, most facilities will not be able to meet the high (and not unreasonable) standard of care you expect, such as daily showers, and more private space. I don't believe it is because healthcare providers do not want to provide a high level of care, but it is because they are not able. Unfortunately, I believe it comes down to an unreasonable amount of regulations that take precedent over caring for people, and insufficient reimbursement rates.
Keep speaking your mind! I hope and pray with every fiber of my being, that as the Baby Boomers age into the long term care system, they will advocate for major systems changes.
For future blogs, I wonder if you could share with us, any tips on how you, and the facilities in which you have resided, have implemented positive, lasting changes. We could learn from your experiences. I would also be curious to know if other facilities have been able to provide you with anything that has helped you with handling the mood concerns of which you speak. What can we provide, that can help the many LTC residents who, at times, are struggling with mood concerns?
Thank you.

I am truly interested in your comments. You can also e-mail me at lady_day1900@yahoo.com.

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Kathleen Mears

www.ltlmagazine.com/blog/kathleen-mears

Kathleen Mears has been a nursing home resident in Ohio for 20 years. She is an incomplete...