Friday, March 24, 2017


Image Courtesy of the March is Cerebral Palsy Awareness Month Facebook Page
:"So, what do you have, MS?" This is the question I am asked the most by a new aide. New aides often assume I have Multiple Sclerosis because that is why many of the younger residents are here. 

New aides are given very little information about the residents they care for. The only thing they may have been told about me is that I  use the sit and stand lift and that I need assistance in the bathroom. Sometimes they are not given any background information at all. When that happens it is up to me to educate them about my CP.

Cerebral Palsy is a disability that's caused by the brain being damaged or not properly developed.  Damage can occur before, during or shortly after birth.  Cerebral Palsy impacts a person's movement, coordination, and balance.  In some cases, a person's speech is affected.  

New aides tell me to relax when they are dressing me.  I have Spastic Cerebral Palsy in all four of my extremities.  The spasticity makes my limbs tight.  It is difficult to move. A new aide makes me nervous. That makes the situation worse.

When a new aide is getting me out of bed I tell them I do not have balance.They cannot let go of me. I also tell them to pull me back on the bed. I do not like to feel as though I am going to slide off of the bed. Feeling like I am falling is just-as-scary as actually having it happen.  I once told a new aide not to let go of me when she was putting me in bed. I guess she didn't believe me because she let go. I feel over on the bed. Maybe she just wanted to see if I was really telling the truth.

No, I do not have MS. I am one of the 17 million Americans who has Cerebral  Palsy. It's not a disease. You cannot catch it. It is a disability. It would be helpful if this facility gave new aides more information about the people that they care for.. I will continue to try and educate the aides who care for me. Some will listen, Some won't. I will keep trying.

I look forward to the day when we won't need to raise awareness. The day when no one will care what someone's disability is. 

March is Cerebral Palsy Awareness Month.  March 25th is Cerebral Palsy Awareness Day. Wear green to show you support Children and adults with CP.  

For more information go to

Sunday, March 19, 2017


A new med tech tried to give me another resident's medication. I knew it was not mine. Thankfully, she believed me. What if I had not been unable to talk? What if I did not know what medications I took?  I have heard stories of a resident being given the wrong medication. It is scary.

Aides have tried to convince me that I have a UTI and that I need to have my vital signs taken at the beginning of each shift.  I have been awakened at midnight to have my vital signs taken. When I tried to tell them I did not have a UTI, I was labeled as uncooperative. The nurse finally came in to tell me the aide made a mistake.  A resident whose name is similar to mine had the UTI. A nurse once tried to convince me I was scheduled to receive a B12 shot. I was sure that the shot wasn't meant for me. When the nurse checked again she realized I was right. The shot was meant for the resident whose name is similar to mine. I am aware of any medications I take. I know the dosage I am to be given. I know any potential side effects.  I ask questions so that there will not be any mistakes.

Aides say I am spoiled because I only want certain aides to take care of me. I want and deserve good care. There a few very good aides here who take their time. They make sure I am clean. They make sure I am comfortable. We only get showers twice a week. I want aides that I know will give me a good shower. I don't want someone who gets me in and out in two minutes. If I ask to be given a longer and better shower many aides tell me they don't have the time. 

I sleep on an air mattress. Almost every night it deflates when my bed rail is raised. If the mattress deflates entirely, I am lying on metal.  Not everyone knows how to reinflate the mattress.When it is finally fixed, it takes awhile for the mattress to reinflate. I am thankful when the aide who knows how to fix my mattress is taking care of me.

I  sleep on my side with a pillow behind my back. The same aide who fixes my mattress knows how to position the pillow so that I am comfortable. I have asked if that aide can adjust my pillow every night. The nurse tells me that anyone can position my pillow for me. If I put my call light on too often because I am not comfortable the staff gets angry. The nurse says she's going to document everything. The documentation would be in my chart. Thankfully, she hasn't documented anything.

There are aides that make me feel comfortable. I trust them. But, there are also are aides that do not listen. They just want to do their job. They do not even take the time to ask my name.  

Living in a facility it is all about trust. I want to feel that the staff who cares for me is listening to me. I want to know that they are taking their time and doing the best job they can. I want to know that they are giving me the care that I deserve. If that means that I am spoiled, I guess I am. And, that's okay.

Friday, March 10, 2017


Being on Medicare/Medicaid is a very humbling experience. It is difficult for my family because they are now responsible for whatever bills my insurance will not pay for.

 I loved to go out and have a drink and a good meal every weekend. I did whatever I wanted to do. I didn’t think about money. I was spoiled.

I have always been physically dependent on caregivers. I learned quickly, when I moved here, that my needs may not be as important as the needs of another resident. I am not the most important person anymore.

 I have become financially dependent as well. I worry that I have become a burden to my family because they have to pay for the things I am unable to pay for. I know it is not fair to them. I cannot earn much, but I am trying to get writing jobs. I make calls, people express interest, I follow up with another call. I am told someone will get back to me, but the call never comes.

I have stopped going out. I don't use my phone much. I am trying to do everything I can to save money.

My chair is very old. I worry it will stop working I know residents who have been waiting more than six months for parts and chairs. The government does not;t think residents of nursing homes need power chairs. It sucks if you have to be pushed around because your power chair is not working. Power chairs mean freedom to those of us who use them.

The dentist that comes here does not x-ray a patient’s teeth. This concerns me because I had issues years ago as a result of my teeth not being x-rayed every year. If I want good dental care my family will have to pay for me to see a dentist. Oral hygiene is not a priority here. There have been times I have had to fight to get assistance with brushing my teeth. I am not proud of it, but I do what I have to make sure my needs are met.

What happens when the proposed state block grants run out? If all the people with disabilities needs have not been met,? Will they just be out of luck?

I am sure the legislators who want to cut services have never been physically or financially dependent on anyone. They have no idea how degrading and demeaning it is. It makes you feel worthless because it lowers your self-esteem.

Click on the link for the latest information from  The Consortium For Citizens W ith Disabilities, an organization that seeks to ensure that the 56 million disabled Americans have what they need to be fully integrated into society. The CCD  is seeking to protect. Medicaid and the Affordable Care Act, from proposed budget cuts/

I have known many people who are on Medicaid. I thought it would never happen to me. Now, it has. It is a very humbling experience.

I'm still here. I will not give up. .Like all disabled, Americans, I will keep fighting for my rights. I will keep fighting for the kind of life I deserve.

Thursday, March 2, 2017


Last week I went to Paraquad.  My goal was to enter their transition program. It is a program that assists people with disabilities in transitioning out of nursing homes back into the community. 

Transitioning out of here won't work for me. It is too risky/ I do not want to try and fail. I might end up in a facility much worse than this one. I am blessed to have my own room. The state will only provide half of the number of hours I need. At least, for now, I am stuck here.

There are houses that three or four people with disabilities live together in.  They are not group homes. The are jut regular houses staffed with caregivers for the people who live there. Shortly after my mom died I was offered the opportunity of moving into one of these houses. They were looking for a fourth person. I declined because I could not imagine leaving my home. Today, knowing how things turned out, I wish I had accepted the offer. I may look into living in a house like that in future. Paraquad is keeping my case open.I was told I could call them with questions or concerns anytime.  

I have not accepted living in a facility. What has changed, however, is that I am not desperate enough to do anything where I might put myself in danger.  I was forced from my home once. I never want to experience that again.

I am still working with The Starkloff Disability Institute  I will not be making the 17-mile trip to the institute. I will be working with them via email. I appreciate their flexibility and willingness to work with me. I am looking for jobs I can do from here.

I am not happy with my situation. Sometimes, when I have been waiting a long time for assistance with the bathroom and I feel my bladder will burst or there is no aide to get me up in the morning because someone did not show up. I wonder what I did to deserve this. I wonder if I will make it.

I remember how strong my mother was. I know I will make it. I will survive.