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Topic How do you know when to get Hospice involved? Go to previous topic Go to next topic Go to higher level

By Mary On 2009.09.15 10:28
Dad is not doing well. I am hoping today is just a really bad day and tomorrow will be better, but I don't think so. He barely eats any more. It is so difficult for him to swallow his pills now. This morning he kept falling asleep when I was cleaning him up and dressing him for the day. He also fell asleep while he was suppose to be swallowing his pills. He is so weak! We have an application into the Veterans Home for Dad but am told it could take up to 90 days to hear from them. I don't know what to do. Please help. Mary

By susger8 On 2009.09.15 11:29
If he's that weak, and especially if he's not eating, I think you should involve hospice now. They can provide you with a lot of help and support.

By Mary On 2009.09.15 11:48
I called Dad's family doctor, whom he saw on August 28, and I got the nurse who would not put me through to the doctor. The nurse told me that Dad would need a diagnosis of dying within 6 months to get hospice, and the doctor did not do that for him on the 28th. She told me to call Dad's neurologist. I felt the doctor would have handled this differently but she would not let me speak with or leave a message for him. UGH! This is hard enough without all of that!

By overwhelmedinFL On 2009.09.15 13:10
I am so sorry. I do not have any experience with Hospice yet but if I were you I would call them directly. They will guide you and put you at ease. Even if you have to go back through his primary doc or his neuro they will make you feel better.

Keep us updated.

By Mary On 2009.09.15 16:07
I spoke with Dad's neurologist this afternoon. He told me that because Parkinson's is not a terminal illness, hospice will not get involved and that if I cannot care for Dad, I need to place him in a nursing home. I know there have been many posts on this but how the medical profession cannot consider Parkinson's a terminal illness is beyond me..............a person with Parkinson's will never get better, only worse. I am very disappointed in the compassion and help given by my Dad's doctors. Thanks for all of your support and responses, Mary

By bandido1 On 2009.09.15 16:32
Mary: Please forward this educational update to your doctor,your neuro and the hospice. It is my favorite reponse to the uninformed.

"Parkinsons does not kill you, but there are no survivors!" Bob C

By pegk3548 On 2009.09.15 17:17
I think you should contact hospice yourself and ask them if they would evaluate your dad for hospice. If they think he is a candidate they will contact the doctor to sign the order. My husbands primary doctor was very helpful but when he sent a request to hospice for an evaluation they said they would be happy to evaluate him. They did not think he would be ready for hospice from the records they received from the doctor but when she came the nurse said we had no idea he was this bad from the paperwork we received. The nurse that came called her supervisor who came over and they sign him up right away. People just don't realise just how terrible this disease is until the experiance it first hand. I wish you luck I hope and pray that you can get it for your dad they are wonderful. Hang in there.

By Mary On 2009.09.15 17:28
Peg, I will try to go directly to hospice. It is certainly worth a try, but the doctor told me that hospice cannot begin without his approval. Thank you for your response. It is so very much appreciated, along with everyone else. The fact that you all take the time to respond, help and support me has no words of thanks. Hugs and blessings to everyone, Mary

By annwood On 2009.09.15 19:37
Sorry that you are having so much of a problem getting this done. You will save yourself much grief if you contact Hospice and have them work with the physician. I found one of the benefits of having Hospice is they have the ability to get right through to a physician - it was never a problem after they got involved.

The nurse is about 10 years behind in her knowledge of Hospice. Originally they did require a 6 month life expectancy but that has changed. Now the patuient only has to have a progressive disease with no hope of survival (sounds like PD to me). They do re evaluate patients periodically to see if they still meet the criteria for Hospice and if so they continue to recertify them.

I can't say enough good about Hospice. They provided all PD meds, diapers, Ensure, hospital bed and bedside commode, an aide to bathe and shave my husband, and a weekly evaluation by a RN. They kept my husband comfortable and allowed him to die at home as he wished. They also have an Inpatient facility for respite and terminal care. If a not for profit one is available in your area they seem to be preferrable.

Sounds as if you have some rude, misinformed medical people - let Hospice take over the communication with them.

By Mary On 2009.09.18 11:14
How do you find a hospice service in your area when doctors are not willing to help? I have searched the Internet with no luck. Thanks, Mary

By annwood On 2009.09.18 11:25
Mary, try the Yellow Pages under Hospice. Call the Social Worker at the nearest hospital. Any nursing home in the area will be able to tell you also - ask for the Social Worker. Good luck!

By bandido1 On 2009.09.18 17:22
Mary: and consider getting a new Dr. -one who cares! Bob C

By sooboo On 2009.09.20 15:18
I had this problem with my mom as well. Her longtime nuero and GP did not want to start hospice (GP was pushing for a feeding tube even though she had an advanced directive stating no tubes) so I found a geriatric specialist that deals with end of lifes issues all the time. The geriatric doctor started hospice. In my opinion it was started to late. If you are asking whether it should be started, chances are it should be.

By WitsEnd On 2009.09.21 13:13
Call hospice directly using the internet or phone book. If you have used home health care before, contact them, tell them the problem and ask if they have someone they can recommend.

If this route doesn't help you find a doctor to write orders, as a last resort, take him to the ER. They will tell you they can't do anything....and get them to write the hospice order. Once he's under hospice, the hospice doctor can renew those orders as required every 6 months if needed. This will get your foot in the door if your own doctor won't do this for you--and shame on him for not!

Totally agree with the earlier posts.....good luck and hang in there.

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