We have asked the hospital to arrange for my dad to come home. He has been through bypass surgery, kidney infections, colon resection due to a mass connected to bladder and small intestine. He has been in the hospital since 4/3 laying in bed. He won't eat. Drinks very little. He has given up. Last Friday he had problems arise from his heart and liver that sent him into ICU for a while. The doctors have all said that with this all he is very week. So, since he can get the same care at home as he can in the hospital, we are taking him home. What does Hospice do? Will there be someone to help with taking care of him.? What about expense.
Since I'm not sure where you are located, I can tell you that I have, as a hospital social worker, had enormous success with Hospice. In my area, they are absolutely instrumental in creating a smooth transition for one helping environment to anther. Here, in the Florida Gulfcoast, a patient can either go to a Hospice facility or home with Hospice services.
The very first thing that will need to happen is that the dr will need to write an order for a Hospice consultation. (YOu should have already been in contact with hospital social worker who can also advise you.)
A coordinator with Hospice (if you decide to take dad home) will facilitate ordering all medications, equipment (a hospital bed, commode, IVs,) and services (nurse, aides, and social workers). I anticipate that someone from your family will be home with your dad in addition to the Hospice help.
The other thing that Hospice will do is that they can provide incredible support for other family members so that you all can focus on your dad. If there are young grandchildren, or grandchilden of any age, Hospice services can help the young ones deal with the passing.
As you father declines, Hospice can generally increase the number of persons they have assisting you in the home.
Hospice is another service of Medicare and all services should be billed through Medicare and, if you have benefits under your father's supplemental police, you assist with co-pay issues.
I do want to emphasize that, while in our area, which is heavily populated, there are a great number of volunteers and licensed professionals from which Hospice has to draw. If you are in a rural area, this may be difficult.
ANywyay, tell the nurse or speak directly to the dr about the referral and that should get things going.
Finally, I know that this is a terribly hard time for you. Keep us posted here and let us know how else we can be of help. My prayers and thoughts are with you; keep your thoughts on the beautiful for they with strengthen and sustain you. chris
Last edited by last1; 05-13-2005 at 01:37 PM.
My dad passed away 3 weeks ago from cancer and died at home. I live in Connecticut and we had Hospice and was not very happy with them. I have heard wonderful things about hospice in Florida (my aunt lives in Florida and hospice was wonderful for my uncle). I guess they vary from state to state but my brother and I were pretty much on our own taking care of my dad. My dad was 61. My mom passed away 5 years ago. The doctor has to prescribe Hospice and insurance should cover it. I will keep you in my thoughts...keep us posted.
Thank you for your repsonses. This was very good information. The doctor placed the order for Hospice on Friday. They have already completed the consult. The nurse at the hospital told mom on Saturday to begin making funeral arrangements. She said that he is collected a great deal of fluid in his body and very little output of urine. She said his platelets are break apart. His skin is breaking down. My mom had a breakdown yesterday. She is trying to decide about what to do to prepare for him coming home. She was talking about what to do about his "things", what she is going to do without him, etc. I took my daughters to see him yesterday. The oldest is graduating on Thursday. So, she work her cap and gown for him and all her honor cords.
Your best bet would be to make pre-funeral arrangements as hard as it is. If he passes away at home at night, the nurse or family member will call the funeral home and they will come no matter what time it is. I feel your family's pain as I just went through it. I wish there was something I could do.....
Thank you all for your help. I do not think we will need Hospice after all. Daddy's kidneys and liver are pretty much shut down. They are now giving him pain meds on a continuing basis and anytime he asks. Soon the build up of this in his liver will slow his respiration and eventually his heart. So, they are actually helping him die in peace as he wished. He said many times he just wanted to close his eyes and go to sleep and then die. It appears he will have his way.
dear debdaniel: know that our thoughts and prayers are with you and your family. Remember we are here to provide whatever supportive assistance you may need. Blessing to you, your parents and your wonderful family. chris
God bless you all for your support and kind words. Dad's BP was 48 yesterday. And that was when they could manage one. I asked 48 top or bottom number. She said both. His pulse was about 120. His lungs are clear but his urine output is about 2 tablespoons for a 24 hour period. He moans and cries out loud at times. He is constantly moving his arms, reaching in the air. He skin is so thin that he is covered in skin tears and sores. I spent all day Saturday with him and part of Sunday. I worked yesterday until the afternoon. I went and releived my brother about 4 p.m. and stayed until 8:30 p.m. I again was there this a.m. about 6:45 a.m. Unfortunately, I had to leave to go to work about 8:00. I was already late for work.
I want to be with him all the time. I hurt at thinking of him not having family with him when he does pass. But, I am past exhaustion. The desire and need to be with him is also wearing me down. I don't see how he keeps going. I told him again and again to try to relax and when God sends His angels, he is to go with them. We will be ok.
Dear debdaniel: I think you have done just about all that you can. Frequently, when we give family permission to pass on, then they do. And some, for whatever reason, do not. Is your father at home? Is he a facility? I know that last time you were considering taking him home with hospice assistance but I'm not sure of the outcome of that desire. Let me know what we can do for you. Our thoughts and our prayers remain with you. chris
I'm sorry, though every situation is different I can imagine how difficult this is. Your father would understand that you cannot possibly be there by his side constantly. He'd want you to take care of yourself and follow through with your responsibilities the best that you can.
My grandmother died in hospice of a very aggressive form of cancer, and her lack of urine output was the signal that she was near the end. Her kidney failure was due to cancer (the cancer released toxins that damaged her kidneys) so the situation may not be the same as in your father's case, but just so you know it was a very short time she was with us after her urine output dropped to that level.
I appreciate all your kind words. Daddy died later in the day on Tuesday, July 5. I had spoke with my mother about 1 p.m. She said that dad had not cried out in pain during his bed change. I knew there was something wrong as he could not be touched without crying out in pain. I put socks on him earlier that day and he did not make a sound.
I left work and called my brother and sister. We were all with dad for several hours. I noticed his breathing had slowed considerably and told mom she could go home, we would be there until the night nurse came on. I knew dad was gone already. His body was cold to touch. Not just his hands and knees, but all of his body. I knew she could not bear to be with him when he died. My brother left shortly after mom. About 30 mins. later dad was stopping between breaths for long periods. I told my sister that he was stopping breathing. I got the nursing home nurse and we watched as he took his last breaths. My sister cried, kissed him, held him. It was so special yet so surreal. I spent about an hour with him and left shortly before the funeral home arrived. My brother was with him when they arrived to take dad.
I will say that I was so upset by the actions of the hospice nurse. She was in dad's room about 45 mins. before dad died. She told me and my brother that dad was gone and it was just a matter of time before the breathing stopped. She knew it was very near. Yet, she left the nursing home without telling us or the nurses. We were alone when he passed. I had to talk to the funeral home on the phone. All this time, I expected Hospice would be there for support. They were not.
Hospice has its ups and down... I had my father on it for a while... But for some unknown reason he was taken off... The admistration never even told us till weeks later. They are still trying to be as if he was being see my hospice..... So I am not sure I would recommend then... There is other agency, maybe like a home care type thing etc.... Good luck.
I just want to say Im sorry for all that everyone is going through or have gone through. My mother is under hospice care herself. Your right when you say there are up's and downs. However you do have the right to request another Hospice nurse if you are not happy with the one you want.
We have been so lucky with my mothers two hospice nurses I cant say enough good things about them or the others who have helped us.
I think its important to understand you can request another nurse find one that fits your needs. We had gone through a few before we found our Hospice Angels..