Wednesday, February 22, 2017


My voice It is the one thing about me that works well. I am blessed.  Some people with CP have difficulty communicating. Unless I am excited or upset people have no trouble understanding me. That was not the case last week.

I lost my voice due to seasonal allergies with post-nasal drip. I was told it was the post-nasal drip that was irritating my throat causing me to lose my voice.  It certainly was irritating, but not just to my throat.

My voice became a high-pitched squeak that was funny and annoying at the same time. I could still make myself understood. The next day, however, was a completely different story. My voice was gone. When I tried to force myself to talk my chest hurt. Nothing came out but an occasional akin-alien-like noise that frightened people. It was embarrassing/, It was also frustrating. I can't write. I couldn't make myself understood by writing things down.  It was tiring having people repeatedly ask, "What did you say/?" Or say, "I am sorry, but I can't understand you, " Then they would leave the room not caring about what I was trying to tell them.

I often feel powerless here. I feel like no one is listening.  Nothing changes.  There are residents here who need more care than I do. I  I know I am a low priority. I need to use my voice to make the staff aware of what I. need.   I need my voice to make sure  that I am not forgotten

Thankfully, the meds worked. My voice is back to normal.. I will never take it for granted again. I   have a new understanding of the frustration that people who have difficulty communicating experience on a daily basis. It's hard. People don't want to take the time to listen. 

People with disabilities need their voice, both literally and figuratively. We don't want to feel powerless and forgotten.  Having a voice empowers you. Speaking up for what you need ensures that you won't be forgotten.

Speak up. Use your voice!


Tuesday, February 7, 2017


Since moving to this facility, I have witnessed major changes in regard to staffing. I have seen residents walking up and down the halls looking for staff to assist them. Not only have I witnessed this, I have been one of the residents looking for someone to help me.

The number of CNA's  to resident ratio varies from state to state. There is no Federal law.  I  spoke with one of the nurses here. She told me if there are 18 residents with one CNA  and a nurse on the floor, the floor is considered to be adequately staffed by the State of Missouri. This is because both the nurse and the CNA are responsible for 9 residents.  In reality, the CNA has to care for all of the residents by themselves.because the nurse has other responsibilities and does not have time to assist with a resident's personal care. Many nights there is just one CNA and nurse on the floor.

Most mornings there is just one CNA and a nurse because a CNA may be running late. when the second CNA arrives, the residents who are on their assignment get a late start to their day. I know a resident who misses breakfast frequently because there is only one CNA on their floor. I  recently read about a health care worker in Georgia who had 24 residents to care for. One person cannot give 24 residents the quality of care they deserve.

According to the National Consumer Voice for Quality Long-Term Care, the Federal government has found when nursing homes do not meet a recommended level of 4.1 hours per day of total nursing time per resident the facility may be putting their residents at risk.

If you think this issue doesn't affect you, you're wrong  Statistics show that over forty percent of Americans sixty-five and over will spend part of their life in a nursing home. That is why I am urging you to become a part of  The Consumer Voice Nursing Home Staffing Campaign. A campaign to raise awareness and educate people on the problem of understaffing in this country. If you have concerns let Congress know by filling out the email form on the Consumer Voice website.

There is a need for higher nurse staffing standards/ Variables such as cost, enforcement, and nursing home bureaucracy should not.hinder facilities from implementing higher staffing standards. Facilities must put residents first.  Staff and administrators go home each night. We are the ones that have to live here. We deserve the best. 

Get involved with The National Consumer Voice. Find out how you can become an advocate for those of us living in long-term care communities.