Hello-My father was depressed and tried to commit suicide. As a result of this attempt, he is now paralyzed from the waist down and is totally dependent on a vent. They try to wean him off, but he always winds up getting sick. We need help and advice. He is in the process of getting Medicaid. My mom wants to bring him home. Is this possible? Will the nurses really be able to give her breaks? right now, the hospital he is in won't even let him come home. He has been there from July,2005-present. Also, he does not do anything but sleep all day. (probably because of depression) I need some sucess stories of what people can do on vents. He does not even read, watch Tv, etc. Please help, we are so lost. Any help, please email me at rashis617@yahoo.com

Dear Rashi,

I'm sorry to hear about your situation. Thank you for writing to our discussion board to look for help.

I built VentWorld in 1999 and have been the director up until a couple of weeks ago. One thing I've learned is that the Internet opens the world up to caregivers, family, and vent users. My best advice is to post your message on Jim Lubin's "Vent User" discussion board:

http://www.makoa.org/ventuser.htm

I'm sure you will find several people eager to help your family try to cope with this difficult situation. You can also peruse the archives to see if there is useful information. I would also contact IVUN (http://www.post-polio.org/ivun/index.html)--I've had personal contact with them and some people on Jim Lubin's list, and they all have been wonderful.

Good luck with your search and please let us know if there is anything we can help with.

-jonathan

Rashi,
my name is Gary Mefford. I am the new director of VentWorld. Jon Kaye's post has some good information very helpful links that you may find informative. I will try to address some of your questions to the best of my ability, however I suggest you follow Jon's advice and present some of your questions, if you still need the answers, to mail list Jon refers to.

Hello-My father was depressed and tried to commit suicide. As a result of this attempt, he is now paralyzed from the waist down and is totally dependent on a vent. They try to wean him off, but he always winds up getting sick. We need help and advice. He is in the process of getting Medicaid. My mom wants to bring him home. Is this possible?
answer: In some case it is possible for a loved one or loved ones to be trained to care for a ventilator patient at home. It requires a great deal of work and many things have to be worked out for each individuals needs, but it is very possible for ventilator dependent people to be taken care of at home.

Will the nurses really be able to give her breaks?
answer: What Medicaid covers varies by location of the country. It is reasonable to consider that home care nurses involved in your father's care can provide breaks to the family care givers.

right now, the hospital he is in won't even let him come home. He has been there from July,2005-present. Also, he does not do anything but sleep all day. (probably because of depression) I need some success stories of what people can do on vents.
answer: Just because he has not weaned so far does not necessarily mean he never will. Each case unique. I have heard of people weaning after even longer periods of ventilator dependence than your father. Many lead very active lives while on continous ventilation.

He does not even read, watch Tv, etc.
answer: Depression is very common for many long term ventilator users, and it sounds like it was an issue before he became vent dependent. From what you say I see no reasont to think your father, though depressed isn't still the same person you have always known as far as heart and mind are concerned. Give him as much love and support as you can, if possible find ways to draw out his sense of humour. Keep trying even though it is difficult. I had a minister friend many years ago who did little but comfort the sick who's favorite saying was "where there is life there is hope" continue to hope and try and you can expect better things to come.

Please update us on your father's, and your progress. Let us know if we can help further.

Another suggested site that may help with what you are seeking is Gene Gant's site ventweaning.com


Gary Mefford
Director VentWorld

As a vent dependant person, I can safely say that a good, fulfilling life is possible. With the right advice, there are many things he can do. Getting Medicaid is a good start. I imagine they will fund his homecare, if the hospital and doctors can word the documents correctly.

Getting a psychiatrist for him is probably the first thing that needs to be done. Left unchecked, the ventilator, and being hospitalized, will only worsen the depression. He needs medication that will help him. That may take some time to work out, though.

Since he is paralyzed, he will need rehabilitation. A rigorous course of physical therapy, every day, will help his depression and give him more physical stength. (That did almost as much for me as the medication.) If he is kept busy--and a good rehab facility will make him keep busy--his mind will have something else to occupy its time, besides thinking about how miserable he is.

A small, portable vent, and a wheelchair to accomadate all his equipment will also help his depression. As much physical independence as possible is great for post-tracheostomy depression patients.

It may take a while to find the right homecare agency and homecare nurses; but when you do find the right people, it will be very nice. It gives the family caregivers a break from the person they are "nursing," and it will give your father a break from everyone else. He will be seeing new faces. Having someone to talk to, besides relatives, is always good.

For a good idea of what a vent patient can do, look up Audrey King.

As far as personal experience, I go out to dinner, go shopping, visit freinds and family, and most other things "normal" people enjoy.

All this will certainly take a while to accomplish. In some ways, it will always be a work-in-progress.

Hi-Thank you so muchfor your reply. Right now, the hospital is suggesting that we put my dad in a nursing home, he is considered "unweanable" at this point. And, of course, the insurance company wants him out of the hospital, and into a home, then. Acc. to the Dr. the unweanability is more about his mental state of mind, as opposed to his injury.
Right now, they won't consider putting him in rehab b/c they said he can't sit up long enough. Which is again,b/c of his mental state of mind. He wouldn't even let the physical therapists do their work.
I am going to print out your reply as well as the other positive stories for him to read, maybe it will be inspriational to him.
Do you know if psychiatrists treat vent patients, unable to speak, but only write?
And, who helps to take care of you?

Rashi,

I have encountered psychiatrists who will work with ventilator patients. In many cases they can make a very significant contribution, in others they have little effect despite their best efforts. Usually the attending staff are good judges of whether a psych consult might help. Many psychiatrists are not willing to work with these patients due to the difficulty in establishing good communication. This doesn't appear to be the case with your father. I have found that the Case Management or Social Services staff are the best resources to locate specific services in a given location. I would encourage your father to continue to try to use the speaking valve. Many patients experience some minor difficulties in early speaking valve trials due to the changes resulting from the trach cuff being deflated and air passing through their upper airway when it has not for some time. These frustrations will usually pass with time and repeated attempts. When they are able to wear the valve for longer periods they usually appreciate the ability to speak quite a lot. The speaking valve also offers significant therapeutic benefits for the other functions of the upper airway which can become atrophied with disuse such as swallowing and upper airway protection against aspiration.

Thank you Jon and josepht for responding in support of Rashi and his father.

Rashi, VentWorld wishes your father continued physical and psychological recovery and both of you the best.


Gary Mefford RRT
Director VentWorld

Rashi.... Very sorry to hear of your fathers situation. As has been mentioned vent dependent people can attain high levels of functionability. We owe many thanks to the polio population for demonstrating how far a vent dependent person can go. Your father does retain normal lungs with an inability to impower them. That's as good as vent dependency can get. He can learn to talk (just like Christopher Reeves "Superman" did) and he can be as mobile as anywhere a wheel chair can go. Portable ventilators use battery and AC power and are relatively small. His sleepy state may be due to sedative medications and/or off base sleep cycles. He should be able to return to a normal night time sleep cycle and day time wake cycle. He will require a full scope of care. His skin, bowl movement, etc.... Many things need attention but they are not at all insurmountible. His psych state is a concern and psych evaluation is definitely warranted. But perhaps him just understanding that he can get out and he can talk will help his mental state. I wish you the best.

I came across your story and wanted to reply as I am in the same situation with my father. He weaned and was off for 5 weeks but once he transferred to the Sub Acute he is currently at they placed him back on the vent and now he cant wean. He is mentally fighting it and is nervous saying he cant breathe so they place him to higher settings rather than push him to try and now i fear he wont ever get off again. We are at the final stages of the current stay at his facility and faced with the decision of Where to next!! I am interested in your story and wonder if you can share what you ended up doing as I am desperate to get all the info i can from people who have experienced this.

Please email me jamiekoness@me.com if you are able to help me with advise.

Thank you for your time