For About and By Caregivers

Subscribe to our bi-monthly publication Today's Caregiver magazine

  + Larger Font | - Smaller Font

CARENOTES | Past Carenotes | Discussion Forum | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 2/03/10

I am helping a young (early 20's) quadraplegic friend who broke his neck in a motorcycle accident. He has had decubitus ulcers on his butt for almost two years, and now such severe contractures of his arms he cannot use his arms at all or hands to drive a chair, nor can he sit up. This started after nine months in an ICU at a local hospital; they told family they gave up on him.
I was able to help get him out of there and he spent 15 months in a wound care place. Since then, he has been shipped around to about six places in as many weeks--including two nursing homes which did not work out. Other nursing homes won't take a 20 something year old... and one who has severe bed sores due to negligence at another hospital. One hospital liaison actually told me their hospital does not take other hospitalsí "mistakes."
We would like to take him home. He wants home. His mom is burnt out from all the traveling to spend time with her son and help at the hospitals. If it were not for her, he would be dead, I have no doubt. She wants him home; but due to his wings, it is hard to turn him.  It is costly to pay out of pocket for more aid. We applied for a CRPD waiver and are waiting for this process to take effect to see if he will be able to get 12 hours of care a day.
He is in limbo. The hospitals do not want a stage IV wound care patient because he is expensive to care for, and chronic, and can take another 10 months to a year to heal, if ever.
We need help on resources in the Somerset County, NJ area.


Reply to Letter  |  View Comments  |  Past Carenotes |  & Discussion Forum

View Comments

Name: Dorothy
Location: Virginia
Date: 02/03/2010
Time: 06:43 AM


My heart aches for this young man. You are a true friend to him. I have been married to a C-4 quad for 30 years. Pressure sores are a constant threat, and as you know, very slow to heal. Have you talked with anyone at Kessler Rehab Center? What about the ombudsman at his current facility? Priority right now should be treatment for the pressure sores, even if it means a location inconvenient for his mother. I would think he needs a specialized facility with an excellent wound care program, not a run of the mill nursing home. He needs a professional advocate, a case worker who will pull strings to get him the care he needs. Do not be afriad to make a scene and be assertive. You might even contact your Congressman or Independent Living Center. I hope you are able to get him placed in a good facility which will give him excellent care. Bless you for being there for him.

Name: Laura George
Location: Atlanta, GA
Date: 02/03/2010
Time: 08:35 AM


Carenote 2/3/10: My heart is there for you. I was 3 months pregnant when my husband was in a hit/run road rage motorcycle accident and now only has the use of his left arm. Here are my list of recommendations: 1. Hospital #1: Find an attorney! 2. He does not have to spend his life in a nursing home and many states have changed their laws to reflect that (Contact ADA/DOJ Attny) 3. There should be a state organization for Brain Injury/Spinal Cord support that can send you a list of resources. In the meantime: You can contact the National Spinal Cord Injury Assocation and speak with Mr. Fertig who will help you. On their website also under state resources NJ/Division of Disability Resources 888-285-3036. I have many more resources and contacts and would be happy to help if you wish. Laura George

Name: Sheila
Location: WV
Date: 02/03/2010
Time: 08:39 AM


Please get in contact with the Christopher and Dana Reeve Foundation at have information there that would help, and if I'm not mistaken, they are located in NJ-you might be able to contact them personally to get help. Good luck, and I will keep you both in my prayers.


Name: Karen Thompson
Location: Louisiana
Date: 02/05/2010
Time: 09:22 PM


Can this fellow be helped with his frozen limbs. Can he get any range of motion even if it took a long time? My husband is a level C5-6 quad and I've been taking care of him since he was 23. He broke his neck when he was 22 and after surg was sent to a rehab hospt. I met him when he came home 6 mos. later. I've spent untold hours with range of motion exercises. He's now 55yrs. old and has no contractures or pressure sores. Can frozen limbs be unfrozen? I would research everything I could to see what could be done for this young man. He's too young to give up on or be stuck in a nursing home. Please don't give up. I'll pray you find an answer. I also had a cousin that was a quad with contractures but we worked with him until he could get in a power chair and was able to go to college. I wish I was young agian so I could help. God Bless you.


Name: Janet, LPN
Location: Atlanta, Ga
Date: 02/14/2010
Time: 06:16 PM


Have your friend tried applying for medicaid in New Jersey or New York? , private duty nursing is covered 24-7 for quadraplegics and what about accident insurance? is the insurance company paying under No-fault? He needs help now with his ulcers !!!. I was a New York Medicaid Provider for spinal cord injured clients. e-mail me at

Name: J
Location: GA
Date: 02/14/2010
Time: 06:26 PM


Your friend needs to talk to a good attorney and look into suing that hospital for possible malpractice and neglect ,if all this happened during his stay under their care and treatment!! they maybe at fault and needs to be accountable and pay for his future medical care, since they made it worse!!


Follow Us on Facebook Follow Us on Twitter Follow Us on Youtube Follow us on Pinterest Google Plus