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Caring Wife Seeks Government Grant For Wheelchair Van For Disabled Husband

by Rachel Gilpin
(Port Orange, FL, USA)

This is not someone in a vegetative state.

This is not someone in a vegetative state.

My name is Rachel Gilpin and I am writing on behalf of my husband Maurice and our children.

Maurice had a brain aneurysm almost five years ago. He has had three brain surgeries, has been on a breathing vent three times and has fought off countless infections.

And let's not forget the stage-four bedsores that we are still dealing with. BUT he is still here by the grace of God, his strong will and my commitment to our family in getting us through this.

Maurice has spent these last several years fighting for his life in different nursing homes. He's been in and out of hospitals where everyone but his family says that he is a vegetative state and I need to let him go.

They say that he'll never recover from this, or that I'm young and that I should give up and go on with my life. Maurice is 54 and I am 35 years of age. It has been one battle after another. I refused to give up on him and our family.

So June 1, 2009 I decided I could do this myself. I have watched the nurses care for him over the years and felt I could do this also. He was finally stable enough bring him home.

Granted he's still on a feeding tube, several medications throughout the day, can't walk or talk, BUT he can communicate with you.

Maurice has thrived since he has been home. It is a joy to watch.

Some days he manages to bring me to tears of joy to see he does something in therapy that everyone in the nursing homes said that he would never be able to do again.

Not all of Maurice's medical expenses are covered through Medicare so that requires a lot of out-of-pocket expenses, which makes it hard to purchase a wheelchair accessible van.

We are confined to our homes because I am unable to get Maurice out and about. Every time Maurice needs to go to the hospital I need to call the ambulance, which costs me $646.19 (not covered) to take him around the corner to the hospital.

I have to pay someone to sit with him if I need to run errands. He would benefit from being out in everyday life again.

We are working so hard as a family to overcome these obstacles in our life, but it is very difficult. So we are searching for any kind of help that might be out there to assist my family with this van.

I have therapy notes that all say the same thing... that he is doing so well and he needs to be exposed to everyday life as much as possible and having a van would help achieve this for our family.

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Feb 10, 2010
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Total Care -- Ambulance Costs
by: Anonymous

I was very moved by your story. It reminded me of my mother who is total care due to Parkinson's Disease, and is a dialysis patient. My father who is in his 70s is like you -- he refuses to give up on my mother even though countless healthcare providers have insisted he do so. On Easter Day 2009 my mother was admitted to the hospital and ended up on life support. She is now at home in a hospital bed unable to use her limbs, but mentally sound. My dad cares for her 24/7 with the help of my sister who lives 15 minutes away with her own family. Medicare pays for ambulance transportation to and from her dialysis center and doctor visits since she cannot move nor sit up. There is a program that provides for these services if that patient is total care (paralyzed, ...). Your husband's physician may not know about the program ... neither my mother's physicians nor the hospital knew of such a program. I spent days reading the Medicare Web site and on the phone with various employees until I found a knowledgeable person. I was told that her physician would need to submit paperwork to Medicare with a letter to the Medicare/ambulance company stating that she was total care and could not be transported any other way. This letter is only good for three months, I believe. Never give up. We have also given my noni juice for years before breakfast. I cannot tell you that it has helped her condition. But, I do know that she also had cancer three years ago and was too sick for chemo. Her physicians say that she should have been dead three years ago just from the cancer. Good luck.

Dec 05, 2009
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Dear Caring Wife
by: Anonymous

God bless you for not giving up on your husband. I know about being disabled and being under the age of retirement. I feel strongly that you can get help with The Centers for Independent Living. (www.ncil.org) They are all over the country. If they can't, they will send you to the right organizations.

Sincerely,
Belinda Margison

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